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Follow up after breast cancer - patient information

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Description: ANNUAL REPORT AND ACCOUNTS 2019/20 Incorporating the quality account 2019/20 Page 2 University Hospital Southampton N
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UHS AR 23-24 Final

Description: 2023/24 Incorporating the quality account University Hospital Southampton NHS Foundation Trust Annual Report and Accounts 2023/24 Presented to Parliament pursuant to Schedule 7, paragraph 25(4)(a) of the National Health Service Act 2006 © 2024 University Hospital Southampton NHS Foundation Trust Contents Welcome from our chair and chief executive 6 Overview and performance 8 Performance report 9 Overview 10 Accountability report 37 Directors’ report 38 Remuneration report 62 Staff report 75 Annual governance statement 95 Quality account 111 Statement on quality from the chief executive 112 Priorities for improvement and statements of assurance from the board 115 Other information 180 Annual accounts 207 Statement from the chief financial officer 208 Auditor’s report 210 Foreword to the accounts 217 Statement of Comprehensive Income 218 Statement of Financial Position 219 Statement of Changes in Taxpayers’ Equity 220 Statement of Cash Flows 221 Notes to the accounts 222 5 Welcome from the Chair and Chief Executive Officer This has been another busy and undoubtedly challenging year across the NHS and UK health and social care system, and much of what has impacted the national picture has been reflected in the operational focuses and patient and people priorities for University Hospital Southampton NHS Foundation Trust (‘UHS’ or the ‘Trust’) over the last year. Meeting and continuing to overcome the challenges we have faced has required an organisation-wide team effort, and looking back at the successes we feel incredibly proud of the achievements of our 13,000 staff. Particular highlights include: • In the top ten in the country (7th) against government targets for elective recovery performance with 118% of activity compared with 2019. • Top-quartile performance against most performance metrics compared to similar sized teaching hospitals, including Emergency Department access, long-waiting patients on Referral to Treatment pathways, Diagnostics and Cancer performance. • Significant investment in new capacity through building new wards and theatres and refurbishing existing areas of the hospital. • Delivery of our highest ever Cost Improvement Programme saving. These achievements place us among the best performing trusts in England in several areas and are even more remarkable against a backdrop of continued periods of industrial action and increasing demand for our services, with many people coming to us with higher levels of acuity than ever before. The Trust’s performance in terms of elective recovery places it as one of the best-performing trusts in England and demonstrates the impact of the Trust’s decision to invest in additional capacity in prior years by building new wards and theatres. The Trust’s Emergency Department performance in respect of its four-hour waiting target at the end of March 2024 has attracted additional capital funding as part of an incentive scheme. Some of this funding will be used to increase the department’s same-day emergency care capacity during 2024/25. From a financial perspective, balancing the complexities of today’s challenges alongside the need to protect and ensure the long-term stability and quality of our service provision, has required the Board to take a number of considered and crucial efficiency improvement actions this year. Whilst challenging, the Trust has seen significant progress in delivering on both its forecasted finance position for 2023/24 and productivity targets. Achieving long-term financial stability is key to us continuing to invest in much needed upgrades and improvements to the parts of our estate that are ageing, and to developing new state-of-the-art facilities and infrastructure that increases our capabilities and capacity into the future. In the last year parts of the hospital have been transformed, with the opening of new wards, theatres and a skybridge to link the estate. Construction of a sterile services and aseptics facility has begun at Adanac Park and the expansion of our neonatal department, where we treat and care for some of our most vulnerable babies and their families, is underway. The development of a new aseptic facility at Adanac Park will have capacity to serve other hospitals within the region and is a significant opportunity for improved system-wide working. 6 We have also worked with our people to design spaces where they can rest, relax and recharge - including a new wellbeing hub and rooftop garden on the Princess Anne Hospital site. In addition, 40 staff rooms across the site have been refurbished thanks to funding from Southampton Hospitals Charity. During the year, the Trust worked to establish the Southampton Hospitals Charity as a separate charitable company to improve its ability to both raise and spend funds. This process completed on 1 April 2024. Work was carried out to refurbish a children’s ward during the year in partnership with the charity. Our people are our greatest asset, and we are pleased to see improvements from the annual staff survey in several areas - such as how people can work more flexibly, access to learning and development and improved satisfaction in support from line managers. We recognise the pressures and demands that come with working in this environment and will continue to ensure everyone working here feels heard, encouraged and supported when raising concerns. At UHS, every opportunity is taken to recognise and celebrate the incredible things our people do here every day, including the return of our in-person annual awards ceremony, monthly staff recognition events and the first ever ‘We Are UHS Week’. These occasions are an important reminder that, even when faced with challenges, there is so much to be proud of and celebrate across the whole Trust. Working together, both within the Trust and across organisational boundaries, remains one of our core values. The partnership between UHS and the University of Southampton is as strong as it has ever been, with more than 250,000 individuals having now taken part in research studies in Southampton. As the lead partner member for Acute Hospital Services on the Hampshire and Isle of Wight Integrated Care Board, we are proactively working with other trusts and healthcare providers in the region to improve the health of the community we serve. In addition, the Trust has continued to work in partnership with other providers across the system to build a shared elective orthopaedic hub in Winchester. It is anticipated that the health and social care system will continue to be a challenging environment in 2024/25. We recognise that many of the big challenges we face can only be solved in partnership with wider local partners, and we are committed to actively playing our part in delivering system-wide solutions. Equally, we will continue to focus on improving whatever is within our internal control, and to work collaboratively with our people to ensure our patients’ experience, safety and outcomes remain central to our decision-making and the actions of everyone at UHS. Jenni Douglas-Todd Chair 19 July 2024 David French Chief Executive Officer 19 July 2024 7 PERFORMANCE REPORT Performance report Introduction from the Chief Executive Officer As with 2022/23, this was another challenging year with continued increasing demand for the Trust’s resources and the need to balance this with the need to deliver quality patient care and at the same time maintain a sustainable financial position. Demand for non-elective care continued to increase with an average of 375 attendances per day to our main Emergency Department. In addition, the number of patients on the 18-week Referral to Treatment pathway rose to 58,000. Patients having no clinical criteria to reside in hospital, but unable to be discharged due to the lack of funded care in a more suitable location, posed and continues to pose a significant challenge for the Trust. The number of patients within this category was as high as 270 at times and was consistently higher throughout the year when compared to 2022/23. Despite this the Trust continued to perform well when compared to other comparable organisations, achieving some of the best Emergency Department and elective recovery fund performance in England. The Trust’s financial position continued to be difficult, which required some difficult decisions in respect of spending controls and controls on recruitment. The Trust focused in particular on controlling spending on temporary and agency staff, but in view of the overall workforce numbers compared to the 2023/24 plan, further controls were implemented in respect of substantive recruitment. Due to the additional controls and the Trust’s best delivery to date on its Cost Improvement Programme (£63.4m), the Trust achieved an end of year deficit of £4.5m, compared to the deficit of £26m anticipated in its 2023/24 plan. 9 Overview About the Trust Our services University Hospital Southampton NHS Foundation Trust is one of the largest acute teaching trusts in England with a turnover of more than £1.3 billion in 2023/24. It is based on the coast in south east England and provides services to over 1.9 million people living in Southampton and south Hampshire and specialist services, including neurosciences, respiratory medicine, cancer care, cardiovascular, obstetrics and specialist children’s services, to nearly four million people in central southern England and the Channel Islands. The Trust is also a designated major trauma centre, one of only two places in the south of England to offer adults and children full major trauma care provision. As a leading centre for teaching and research, the Trust has close working relationships with the University of Southampton, the Medical Research Council, National Institute for Health and Care Research (NIHR), Wellcome Trust and Cancer Research UK. The Trust is consistently one of the UK’s highest recruiting trusts of patients to clinical trials and one of the top nationally for research study volumes as ranked by the NIHR Clinical Research Network. Every year the Trust: treats around 155,000 inpatients and day patients, including about 70,000 emergency admissions sees over 750,000 people at outpatient appointments deals with around 150,000 cases in our emergency department The Trust provides most of its services from the following locations: • Southampton General Hospital – the Trust’s largest location, where a great number of specialist services are based alongside emergency and critical care and which includes Southampton Children’s Hospital. • Princess Anne Hospital – located across the road from Southampton General Hospital and providing maternity care and specialist care for women with medical problems during pregnancy and babies who need extra care around birth across the region. • Royal South Hants Hospital – although the Trust does not operate this site near the centre of Southampton it provides a smaller number of services from this location. • New Forest Birth Centre – located at Ashurst on the edge of the New Forest and run by experienced midwives and support staff it acts as a community midwifery hub. The services provided by the Trust are commissioned and paid for by the Hampshire and Isle of Wight Integrated Care System (ICS) and, in the case of more specialised services (such as treatments for rare conditions), by NHS England. Trust services are supported by clinical income, of which 54% is paid for by NHS England and 43% by integrated care boards, predominantly the Hampshire and Isle of Wight Integrated Care Board (ICB). These are provided under a standard NHS contract, which incorporates ongoing monitoring of the Trust and the quality of the services provided. 10 Our structure UHS gained foundation trust status on 1 October 2011. A foundation trust is a public benefit corporation providing NHS services in line with the core NHS principles: that care should be universal, comprehensive and free at the point of need. The Trust is licensed as a foundation trust to provide these services by NHS England and the healthcare services we provide are regulated by the Care Quality Commission. Since 1 July 2022, the Trust has been part of the Hampshire and Isle of Wight Integrated Care System when this was established through the Health and Social Care Act 2022. Each ICS has two statutory elements: an integrated care partnership (ICP) and an integrated care board. The ICP is a statutory committee jointly formed between the NHS integrated care board and all upper-tier local authorities that fall within the ICS area. The ICP brings together a broad alliance of partners concerned with improving the care, health and wellbeing of the population, with membership determined locally. The ICP is responsible for producing an integrated care strategy on how to meet the health and wellbeing needs of the population in the ICS area. The ICB is a statutory NHS organisation responsible for developing a plan for meeting the health needs of the population, managing the NHS budget and arranging for the provision of health services in the ICS area. The Trust has been a university teaching hospital since 1971. The diagram below provides an overview of the overall organisational structure of the Trust. Public and foundation trust members Council of Governors Board of Directors Executive Directors Division A Division B Division C Division D Surgery Critical Care Opthalmology Theatres and Anaesthetics Cancer Care Emergency Medicine Helicopter Emergency Medical Services Medicine and Medicine for Older People Pathology Specialist Medicine Women and Newborn Maternity Child Health Clinical Support Cardiovascular and Thoracic Neurosciences Trauma and Orthopaedics Radiology Trust Headquarters Division 11 Our values The Trust’s values describe how things are done at UHS and act as a guide to all staff working with colleagues to deliver high quality patient care and a great patient experience every day. These values are: Patients, their families and carers are at the heart of what we do. Their experience of our services will be our measure of success. Partnership between clinicians, patients and carers is critical to achieving our vision, both within hospital teams and extending across organisational boundaries in the NHS, social care and the third sector. We will ensure we are always improving services for patients through research, education, clinical effectiveness and quality improvement. We will continue to incorporate new ideas, technologies and create greater efficiencies in the services we provide. 12 Our strategy 2021-25 The Trust’s strategy was updated during 2020/21 to take account of everything its staff had experienced during the COVID-19 pandemic and what had been learnt from this. The vision for UHS is to become an organisation of world class people delivering world class care. The Trust’s strategy is organised around five themes and for each of these it describes a number of ambitions UHS aims to achieve by 2025. Theme Ambitions Outstanding patient outcomes, • We will monitor clinical outcomes, safety and experience of our experience and safety patients regularly to ensure they are amongst the best in the UK By 2025 we will strengthen our and the world. national reputation for outstanding • We will reduce harm, learning from all incidents through our patient outcomes, experience and proactive patient safety culture. safety, providing high quality care • We will ensure all patients and relatives have a positive experience and treatment across an extensive of our care, as a result of the environment created by our people range of services from foetal and our facilities. medicine, through all life stages and conditions, to end-of-life care. Pioneering research • We will recruit and enable people to deliver pioneering research in and innovation Southampton. We will continue to be a leading teaching hospital with a growing, reputable and innovative research and development portfolio • We will optimise access to clinical research studies for our patients. • We will enable innovation in everything we do, and ensure that ‘cutting edge’ investigations and treatments are delivered in Southampton. that attracts the best staff and efficiently delivers the best possible treatments and care for our patients. World class people • We will recruit and develop enough people with the right Supporting and nurturing our knowledge and skills to meet the needs of our patients. people through a culture that values • We will provide satisfying and fulfilling roles, growing our talent diversity and builds knowledge and through development and opportunity for progression. skills to ensure everyone reaches • We will empower our people, embracing diversity and embedding their full potential. We must provide compassion, inclusion and equity of opportunity. rewarding career paths within empowered, compassionate, and motivated teams. Integrated networks and collaboration We will deliver our services with partners through clinical networks, collaboration and integration across geographical and organisational boundaries. • We will work in partnership with key stakeholders across the Hampshire and Isle of Wight integrated care system. • We will strengthen our acute clinical networks across the region, centralising when necessary and supporting local care when appropriate. • We will foster local integration with primary and community care as well as mental health and social care services for seamless delivery across boundaries. • We will build on our successful partnership with University of Southampton (UoS), growing our reputation as a national leading university teaching hospital. 13 Theme Foundations for the future Making our enabling infrastructure (finance, digital, estate) fit for the future to support a leading university teaching hospital in the 21st century and recognising our responsibility as a major employer in the community of Southampton and our role in broader environmental sustainability. Ambitions • We will deliver best value to the taxpayer as a financially efficient and sustainable organisation. • We will support patient self-management and seamless care across organisational boundaries through our ambitious digital programme, including real time data reporting, to inform our care. • We will expand and improve our estate, increasing capacity where needed and providing modern facilities for our patients and our people. • We will strengthen our role in the community as an employer of choice, a partner in delivery of services to our population and by leading the Greener NHS agenda locally. During each year of the strategy the Trust sets out a more detailed series of objectives to achieve and progress towards the delivery of its ambitions. In 2023/24 these objectives included: Outstanding patient outcomes, experience and safety Pioneering research and innovation World class people Integrated networks and collaboration Foundations for the future • Increasing the number of reported Shared Decision-Making conversations. • Increasing the number of specialities reporting outcomes that matter to patients. • Rolling out the Patient Safety Incident Reporting Framework across the Trust. • Working with patients as partners to improve patient satisfaction. • Treating patients according to need but aiming for no patient to wait, other than through patient choice, more than 65 weeks for treatment. • Delivering national metrics for site set-up time to target for clinical research studies. • Improving the Trust’s position against peers. • Delivering year three of the Trust’s research and innovation investment plan. • Developing the five-year research and development strategy implementation plan and delivery of the first year. • Strengthening and broadening the partnership between the Trust and the University of Southampton. • Supporting delivery of the Trust’s workforce plan for 2023/24. • Reducing turnover and sickness absence rates. • Increasing overall participation in the NHS staff survey and maintaining overall staff engagement score. • Increasing the proportion of appraisals completed. • Delivering the first year objectives of the Inclusion and Belonging strategy. • Working in partnership with acute trusts to agree and implement the acute services strategy. • Producing and embedding an internal framework for network development. • Working with the local delivery system on vertical integration to reduce the number of patients without criteria to reside. • Working with system partners to open a surgical elective hub. • For the Trust to be seen as an ‘anchor institution’ in the local area. • Delivering the Trust’s financial plan for 2023/24. • Engaging the organisation in the challenge to manage demand so that capacity and demand are in equilibrium. • Delivery of the Always Improving strategy priorities. • Delivering the Trust’s capital programme in full. • Entering into a new energy performance contract and delivering the first year of the Public Sector Decarbonisation Scheme. Performance against these objectives was monitored and reported to the Trust’s Board on a quarterly basis. 14 At the end of 2023/24, the Trust had met the objectives set as follows: Corporate Ambition Outstanding patient outcomes, safety and experience Pioneering research and innovation World class people Integrated networks and collaboration Foundations for the future Totals Number of Objectives 5 5 5 5 5 25 Achieved in full 4 3 2 3 2 14 Partially achieved 1 2 2 1 3 9 Not achieved 0 0 1 1 0 2 Particular areas to highlight where the Trust has achieved strong delivery during the year include: • Delivery of quality priorities in Shared Decision-Making and the roll out of the Patient Safety Incident Response Framework. • Achieving the Trust’s 65-week waiter glide path. • Successful delivery of a number of research and development priorities, including work with the University of Southampton. • Maintaining sickness absence and turnover well below the targets set at the beginning of the year, and successfully delivering the first year of the Trust’s Inclusion and Belonging strategy. • Delivery of the Trust’s full available capital budget and completion of the first year of the Trust’s decarbonisation scheme. 15 Principal risks to our strategy and objectives The Board has identified and manages the principal risks to the delivery of its strategy and objectives through its board assurance framework. The principal risks to the delivery of its strategy and objectives identified by the Trust during 2023/24 were that: • There would be a lack of capacity to appropriately respond to emergency demand, manage the increasing waiting lists for elective demand, and provide timely diagnostics, that results in avoidable harm to patients. • Due to the current challenges, the Trust fails to provide patients and their families or carers with a highquality experience of care and positive patient outcomes. • The Trust would not effectively plan for and implement infection prevention and control measures that reduce the number of hospital-acquired infections and limit the number of nosocomial outbreaks of infection. • The Trust does not take full advantage of its position as a leading university teaching hospital with a growing, reputable and innovative research and development portfolio, attracting the best staff and efficiently delivering the best possible treatments and care for its patients. • The Trust is unable to meet current and planned service requirements due to unavailability of qualified staff to fulfil key roles. • The Trust fails to develop a diverse, compassionate and inclusive workforce, providing a more positive experience for all staff. • The Trust fails to create a sustainable and innovative education and development response to meet the current and future workforce needs identified in the Trust’s longer-term workforce plan. • The Trust does not implement effective models to deliver integrated and networked care, resulting in sub-optimal patient experience and outcomes, increased numbers of admissions and increases in patients’ length of stay. • The Trust is unable to deliver a financial breakeven position, resulting in: inability to move out of the NHS England Recovery Support Programme; NHS England imposing additional controls/undertakings; and a reducing cash balance, impacting the Trust’s ability to invest in line with its capital plan, estates and digital strategies and in transformation initiatives. • The Trust does not adequately maintain, improve and develop its estate to deliver its clinical services and increase capacity. • The Trust fails to introduce and implement new technology and expand the use of existing technology to transform its delivery of care through the funding and delivery of the digital strategy. • The Trust fails to prioritise green initiatives to deliver a trajectory that will reduce its direct and indirect carbon footprint by 80% by 2028-2032 (compared with a 1990 baseline) and reach net zero direct carbon emissions by 2040 and net zero indirect carbon emissions by 2045. During 2023/24, the Trust saw continued increased demand for its services, particularly in the Emergency Department In addition, the number of patients having no clinical criteria to reside in hospital, but unable to be discharged due to a lack of appropriate care packages was higher than anticipated and spiked during winter, which significantly impacted patient flow through the hospital and required the Trust to engage additional temporary staff. The number of patients in this category peaked at 270 during the winter. There were particular challenges in respect of those patients with a primary mental health care need who would be better cared for in a more suitable alternative setting. 16 Performance overview The Trust monitors a broad range of key performance indicators within its departments, divisions, directorates and through Trust executive committees. On a monthly basis, the Board and executive committee receives a performance report containing a variety of indicators intended to provide assurance in respect of the Trust’s strategy and that the care provided is safe, caring, effective, responsive and well-led. This report also includes the Trust’s performance against the national targets set by NHS England. The performance reports include a ‘spotlight’ section, which provides more detailed analysis of a particular area. Typically, this is one of either the national targets or the Trust’s performance against the expectations set out in the NHS Constitution. The monthly performance report is also published on the Trust’s website. The Chief Executive Officer provides a regular report on performance to the Council of Governors, which includes a range of non-financial and financial performance information. Capacity The Trust continued to experience high demand for its services, especially in the Emergency Department, with average demand during the year being around 375 patients presenting per day in the main adult and children’s emergency department. In addition, the Trust experienced a significant impact on flow within the hospital due to a high number of patients having no clinical criteria to reside in hospital but unable to be discharged. This number was as high as 270 at times during winter: an increase of around 50 patients when compared to the prior year. The Trust also saw an increase in the number of referrals with the number of patients on a waiting list under the 18-week Referral to Treatment pathway rising from approximately 55,000 to 58,000 by the end of the year. In common with other trusts, the ongoing industrial action also impacted the Trust’s ability to provide urgent care and deliver on its elective recovery programme. Quality and compliance Despite the challenges, the Trust’s Emergency Department performance was one of the highest in England in March 2024, which resulted in additional capital funding being awarded. In addition, the Trust’s elective recovery performance was one of the best in England at 118% compared to 2019. The Trust continued to monitor the quality of care delivered throughout 2023/24 through a number of established quality assurance programmes. Clinical leaders monitored key quality, safety and patient experience indicators such as falls, pressure ulcers and venous thromboembolisms. Quality peer reviews were carried out, most significantly through Matron-led Quality Walkabouts every week in and out of hours focusing on the five key CQC questions – safe, effective, responsive, caring, and well-led. The Trust’s Clinical Accreditation Scheme builds on this intelligence, with clinical areas completing self-assessments of performance and review teams completing onsite visits. Patient representatives were included in these review teams. Learning was shared at the Clinical Leaders’ Group and via quarterly reports. The Trust was an active partner in a South-East accreditation network, offering advice and a steer to providers who are just setting up or looking to develop their own scheme, and extended that advice and support to other providers in England. 17 On 15 May 2023, the CQC inspected the maternity and midwifery service at Princess Anne Hospital as part of their national maternity inspection programme. The inspection report was published 11 August 2023, and the Trust retained its overall rating of ‘good’. This year UHS introduced its Fundamentals of Care (FOC) initiative. Whilst this is not a new concept, there were concerns that missed fundamental care had been amplified during the COVID- 19 pandemic. This initiative aims to empower and educate staff at all levels to ensure fundamental care is at the heart of what the Trust does. The Trust completed its transition to the Patient Safety Incident Response Framework (PSIRF) and collaborated with the ICB to develop a PSIRF plan and policy to underpin the change. The Trust implemented the requirements in respect of ‘Martha’s Rule’ where patients, relatives and carers have a legal right to a rapid review by a critical care outreach team during an acute deterioration episode in and out of hours. The Trust continued its focus on infection prevention and control, responding rapidly to rises in infection over the winter, and successfully flexing initiatives and innovations to achieve successful management in a responsive manner. The Trust progressed its Always Improving strategy and successfully supported the identification and implementation of further quality improvement projects. This included improvements across theatres, inpatient flow and outpatient programmes. During the year, average length of stay was reduced by 1.64%, day theatre cancellations were reduced by 200, and 42,350 patients were placed onto Patient Initiated Follow Up (PIFU) pathways. Further information can be found in the Quality Account. Partnerships The Trust works within the Hampshire and Isle of Wight Integrated Care System, and is an active member of a number of partner groups including the Acute Provider Collaborative Board and the Health and Wellbeing Board. The Trust develops and agrees its annual financial plans with the Integrated Care Board. The Trust is a member of a number of specific partnership groups for particular services, including the Central and South Genomics Medicine Service, the Children’s Hospital Alliance and the Southern Counties Pathology Network. The Trust works actively as a partner with other provider organisations around clinical networks, particularly with acute Trusts within the Integrated Care System and others closely located geographically. The Trust also links closely with the University of Southampton on a number of topics including research, commercial development and education and has a developed meeting structure to oversee this. 18 Workforce The Trust’s key areas of focus during 2023/24 were in respect of increasing the substantive workforce whilst also reducing reliance on bank and agency usage, and reducing staff turnover and sickness. Although the Trust was successful in recruiting to substantive posts, the expected reduction in reliance on bank and agency staff did not materialise, which meant that the Trust was 331 whole-time equivalents above its plan for 2023/24. The Trust was successful in reducing staff turnover from 13.5% in 2022/23 to 11.4%, achieving the local target of . Cancer Waiting Times - 2 Week Wait Performance Cancer Waiting Times - 2 Week Wait Performance 100% 90% 80% 70% 60% 50% 40% Apr-23 May-23 Jun-23 Jul-23 Aug-23 Sep-23 Oct-23 Nov-23 Dec-23 Jan-24 Feb-24 Mar-24 Performance % standard met The national target was for 96% of patients to commence treatment within 31 days of diagnosis. In March 2024, the Trust achieved 92% and performed in the range of 86%-94% throughout the year. The Trust has continued to make progress against the target for treatment of cancer within 62 days of an urgent GP referral, improving performance from 64% in April 2023 to 76% in March 2024 (NHS average: 69%). First definitive treatment for cancer within 31 days of a decision to treat % standard met Cancer waiting times 31 day RTT performanceUHS vs. NHSE average Cancer waiting times 31 day RTT performance UHS vs. NHSE average 96% 94% 92% 90% 88% 86% 84% 82% 80% 78% 76% Apr-23 May-23 Jun-2 3 Jul-2 3 Aug-23 Sep-2 3 Oct-23 Nov-2 3 Dec-23 Jan-24 Feb-2 4 Mar-24 Performance NHS Average 27 Treatment for Cancer within 62 days of an urgent GP referral to hospital Cancer Waiting Times 62 Day RTT Performance UHS vs NHSE Average Cancer Waiting Times 62 Day RTT Performance UHS vs NHSE Average % standard met 1 00% 80% 60% 40% 20% 0% Apr-23 May-23 Jun-23 Jul-23 Aug-23 Sep-23 Oct-23 Nov-23 Dec-23 Jan-24 Feb-24 Mar-24 Performance NHS Average 28 Quality priorities Priorities for improvement 2023/24 Last year the Trust continued its ambition to deliver the highest quality care shaped by a range of national, regional, local, and Trust-wide factors. During the year the Trust continued to experience unprecedented demand on its services, with flow, capacity, infection prevention and safety all presenting challenges. However, the Trust was confident in its ability to keep a focus on its quality priorities, and its teams worked hard to achieve their goals even in these difficult circumstances. Priorities are aligned to the three core dimensions of quality: • Patient experience – how patients experience the care they receive. • Patient safety – keeping patients safe from harm. • Clinical effectiveness – how successful is the care provided? Out of the six priories set, the Trust achieved five and partially achieved one. Overview of success Quality Priority One Improving care for people with learning disabilities and autistic (LDA) people across the Trust. Supporting staff delivering this care. Outcome against goals: achieved Key achievements: • LDA working group reestablished. • Development of an improvement plan using the NHS Learning Disability Improvement standards. • The LDA team has moved to the virtual enhanced care group in Division B where operational and governance support, leadership, and peer support/learning opportunities has been strengthened. • Sensory Boxes have been introduced for all clinical areas, funded by the Hampshire and Isle of Wight (HIOW) Integrated care board (ICB). These boxes include noise cancelling headphones, fidget toys, communication books and visual cards to support patients and wards. • Recruited additional Learning Disability Champions. • Established links with the parent carer forum (PCF) for the local area and are now attending regular events. A representative from the PCF sits on the LDA working group. The LDA team are working with the Trust lead for patient experience to develop this aspect of the LDA workplan over the next year. Quality Priority Two Supporting patients, service users and staff to overcome their tobacco dependence via a smoking cessation programme. Outcome against goals: achieved Key achievements: • Package of support available to patients who may be smokers and who need to be supported not to smoke during their treatment. • Fully trained team of tobacco advisors working in the hospital and an advisor working in the outpatient setting supporting the patients once they have returned home. • Devised the IT changes the Trust would like to implement to improve its service and referral process. • Recruited 30 smoke-free champions. • Successfully supported 1,131 patients with a self-confirmed quit rate of 45.6% at 28 days. • Supported 109 outpatients who have successfully achieved a 60% quit rate. • On track to achieve the goal to go smoke-free by April 2024 including the removal of smoking shelters. 29 Quality Priority Three Ensure carers are fully supported, involved, and valued across all our services by developing the carers support service across the Trust in partnership with Southampton Hospitals. Outcome against goals: partially achieved Key achievements: • Carers now have a more comprehensive package of concessions and vouchers to help support their cared-for person (e.g. free parking available onsite for blue badge owners is now available). • Listening events were held to put patients at the centre of transforming the way we deliver care is delivered, enabling their voices to improve the quality of care and outcomes for all. • Developed joint working with local partners (e.g. Children’s Society and No Limits to support young carers). Not yet achieved: • The ‘pathway to support, has not yet been developed. Work is ongoing to develop a new strategy. • A charity-funded carers’ support worker has not yet been appointed. • The carers’ training package has not yet been relaunched. Quality Priority Four Put patients at the centre of transforming the way care is delivered, enabling their voices to improve the quality of care and outcomes for all. Outcome against goals: achieved Key achievements: • Work has continued to work across corporate and divisional services to embed patients and carers into quality and service improvement, creating new patient groups (e.g. Mesh Support Group). • Successfully developed our engagement with various local communities, working to ensure that a range of care experiences are considered ( e.g. there is now a Gypsy, Roma, and Irish Traveller community health liaison officer to ensure that these communities are engaged with and brought into work to improve the inclusivity of our services). • Attending multiple public engagement opportunities (Young Carers’ Festival, Mela, University Freshers’ Fayres, Carers’ Listening Lunch, Hoglands Park Play Day, visits to local temples and ‘Love Where You Live’). • Youth and Young Adult Ambassador involvement has increased, including attendance toat meetings of the Council of Governors, and supporting hospital projects. • A Celebration of Carers Week and Volunteers Week were run. • The Trust has analysed its reported outcome measures to identify health inequalities in its services. This information has been used to set a new quality priority for 2024/25. • An SMS friends and family test text survey has been introduced to improve the response rate on patient feedback from the Emergency Department. In the first three months following the survey launch, responses increased from 24 to 424. 30 Quality Priority Five To develop the Trust’s clinical effectiveness process, connecting to the Trust’s Always Improving approach to measuring, understanding, and using outcomes to improve patient care. Outcome against goals: achieved Key achievements: • The Trust has developed its clinical effectiveness process across the Trust with involvement of informatics, governance and management teams, clinical effectiveness leads as well as reporting committees. • Patient representation onhas been included in the clinical assurance meeting for effectiveness and outcomes (CAMEO) to ensure conversations focus on what matters to patients. • The CAMEO template has been changed to focus discussions on areas the specialty is proud of (strong or improving outcomes), areas for improvement (poorly benchmarked or worsening outcomes) and planned actions. • The Trust encourages the use of run and/or statistical process control charts along with benchmarking where available. • Details of NICE and quality standards and national and regional reviews are included to cover breadth of clinical effectiveness. • How the clinical effectiveness team works has been reorganised, aligning each of them to each division giving a named link which helps to deepen understanding and improve links with governance and improvement activities locally. • Working with informatics to establish a core set of clinical outcome measures which are meaningful to patients, which can be reported centrally (starting with surgical specialities). • Starting to develop an education strategy and platform to support staff with a number of tools used in clinical effectiveness as well as clarity on where and how to record and evidence audit and service improvement. • A revised strategy has been drafted. Quality Priority Six Developing a culture where all clinical staff have a basic knowledge of diabetes. Outcome against goals: achieved Key achievements: • Launch of the ‘Start with the Diabasics’ Initiative, designed to help give diabetes visibility across UHS. • Delivered an extensive education programme to clinical staff across the professions and bands, including the introduction of some e-learning and a Diabasics introductory video has been shown at all trust staff inductions since July 2023. • Supported the development of 45 diabetes link nurses, resulting in all ward areas now having a named diabetes link nurse. • Improved triage for referrals. • Established processes for ‘lessons learned’. • Developed IT solutions to improvingimprove alerts and guidance. • A ‘Ketone Wednesdays’ initiative has been created in response to overuse of blood ketone testing (estimated waste cost of £100,000 per year). • The Trust’s lead diabetes specialist nurse and the Diabasics Initiative were both shortlisted for National Quality in the Care Diabetes Awards (October 2023). • The Diabasics Initiative was mentioned as a case study on the Diabetes UK charity website as an example of good practice that could be reproduced elsewhere. More information can be found about how the Trust delivered and measured its quality priorities, including feedback from patients and staff and improvement aims and quality priorities for 2024/25, in the Trust’s Quality Account for 2023/24. 31 Financial performance The Trust delivered a deficit of £4.5m from a revenue position of over £1.3bn, following receipt of £24.6m one-off cash support from NHS England. UHS started the year with an underlying deficit as a result of a number of cost pressures, notably demand for services being above block contract levels and the cost of national pay awards being above funded levels. The Trust has also continued to face a number of pressures, including high numbers of patients who no longer meet the criteria to reside in the hospital, and high demand for patients with a primary mental health need. In 2023/24, the Trust delivered a record savings level of £63.4m (5%) across a range of programmes. Trust operating income rose by £107m from the previous financial year, most notably funding the NHS pay award, as well as additional elective recovery funding. Trust operating expenses rose by £89m, incorporating funded inflationary costs as well as costs relating to the cost pressures outlined above. The Trust has also continued its reinvestment of surplus cash into infrastructure for the Trust, with capital investment of over £75m, including investment in new wards, theatres, decarbonisation, digital infrastructure, neonatal expansion and backlog maintenance. Trust cash and cash equivalents finished the year at £79m, a reduction of £24m from the previous year due to the operating loss and capital investment outlined above. Whilst liquidity remained strong in 2023/24 supported by NHS England cash support, the underlying financial deficit means it is likely to decline further in 2024/25. The Trust is continuing to monitor its cash position closely and is considering whether additional cash support may be required in 2024/25. Sustainability The Trust recognises that everyone has a part to play in responding to the climate crisis. In March 2022, the Trust agreed its own green plan in response to the challenge of the NHS becoming the world’s first health service to reach carbon net zero. Now in its third year, the plan identifies the Trust’s key areas of focus and its ambitions and has seen progress across all areas of the plan. The plan sets out the scale of the challenge, the Trust’s commitment to reducing the impact on the environment and the steps to be taken across the following categories: • Estates and facilities • Clinical and medicines • Digital transformation • Supply chain and procurement • Travel and transport • Waste and resources • Food and nutrition • Adaptation • Biodiversity • Wider sustainability The Trust continues to progress through its green plan and has completed the ‘Greener NHS’ reporting tool for several quarters, which has demonstrated good progress. In addition, the Trust is planning to launch its ‘Our Sustainable UHS’ app for staff, which will give tips on sustainability and create personalised travel plans, including identifying potential contacts for car sharing. In addition, the Trust is considering proposals to implement additional solar power, smart metering and expanding the use of LED lighting. 32 In 2022/23, the Trust was successful in bidding for £29.4m of funding through the Public Sector DeCarbonisation Fund, which will be used to fund green initiatives as part of the Trust’s capital programme. During the year the Trust successfully bid for £823k in National Energy Efficiency Funding which has been used to upgrade the lighting at Princess Anne Hospital. Social, community, anti-bribery and human rights issues The Trust recognises its responsibilities under the European Convention on Human Rights (included in the Human Rights Act 1998 in the UK). These rights include: • right to life • right not to be subjected to inhuman or degrading treatment or punishment • right to liberty and freedom • right to respect for privacy and family life. These are reflected in the duty, set out in the NHS Constitution, to each and every individual that the NHS serves, to respect their human rights and the individual’s right to be treated with dignity and respect. The Trust is committed to ensuring it fully takes into account all aspects of human rights in its work. An equality impact assessment is completed for each Trust policy. For patients, the Trust’s safeguarding policies protect and support the right to live in safety, free from abuse and neglect and other policies and standards are designed to optimise privacy and dignity in all aspects of patient care. Feedback from patients and the review of complaints, concerns, claims, incidents and audit help to monitor how the Trust is achieving these objectives. The Trust’s green plan, approved by the board of directors in March 2022, recognises the Trust’s broader role and responsibility to address the issues of climate change, air pollution, waste and environmental decline present to the city of Southampton and the impact that these issues have on the health and wellbeing of the local population served. Although the Modern Slavery Act 2015 does not apply to the Trust, its green plan sets out an ambition to stop modern slavery. The Trust is also committed to maintaining an honest and open culture within the Trust; ensuring all concerns involving potential fraud, bribery and corruption are identified and rigorously investigated. The Trust has a Fraud, Bribery and Corruption Policy, a Standards of Business Conduct Policy and a Raising Concerns (Whistleblowing) Policy. These apply to all staff and to individuals and organisations who act on behalf of UHS. Anti-bribery is part of the Trust’s work to counter fraud. This work is overseen by the Audit and Risk Committee, which receives regular reports from the local counter fraud specialist on the effectiveness of these policies through its monitoring and reviews, providing recommendations for improvement, as well as an annual report from the freedom to speak up guardian. You can read more about the work of the Audit and Risk Committee and the Trust’s approach to counter fraud in the Accountability Report. Events since the end of the financial year There have been no important events since the end of the financial year affecting the Trust. Overseas operations The Trust does not have any overseas operations. 33 Equality in service delivery NHS trusts have an essential role in tackling health inequalities, both as part of the services they provide, but also through work with the wider system. By working with those in integrated care systems, local authorities and third sector organisations, the Trust can have a significant impact on the health of the local population. The national focus on health inequalities is growing. This comes with new legal duties around reporting information and expectations to report on improvement programmes. In September 2023, a health inequalities steering group was initiated, under the leadership of the Chief Medical Officer, with representation from clinical, operational, transformation, patient experience, research, organisational development and culture, informatics, public health and the Integrated Care Board. The group focused on scoping future priorities aligned to national guidelines, contractual obligations and priorities, regional priorities, feedback from clinical teams and patients, understanding where action is already being taken, and what the data is showing. Overall, the group
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The journey in

Description: On your way to Audiology? See if you can spot these on your way down to see me! Found it! Come
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Mental wellbeing support on the neonatal intensive care unit (NICU) - patient information

Description: Patient information factsheet Mental wellbeing support on the neonatal intensive care unit (NICU) If your baby is unwell or has been
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Annual-report-2018-19

Description: ANNUAL REPORT AND ACCOUNTS 2018/19 incorporating the quality account 2018/19 Presented to Parliament pursuant to Sche
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TLHC Easy Read Booklet

Description: Your lung health check Publication number 000959 Lung health checks Lung health checks are being offered to people in your area, aged between 55 and 74, who smoke or used to smoke. You have been offered this check because we want to find out how well your lungs are working. A lung health check can help find problems early. This is often before you notice anything is wrong. Bringing friends You can bring a friend, family member or partner with you to the lung health check. 2 What happens at a lung health check Your lung health check will take about 20 minutes. The nurse will ask you some questions about your breathing. Your check will be done over the phone but you can ask to come in person if you would like to. They will ask you about your everyday life, your family and your health. The nurse will ask you about your everyday life, your family and your health. The nurse may talk to you about having a lung scan. A lung scan checks for lung cancer. 3 Your information We will ask you if we can share your lung health check information. Asking questions We will make sure that you have plenty of time to chat to the nurse to ask questions. 4 The result of your lung health check At the end of the lung health check we will tell you: 1. No problems found We will write to your doctor so they know about the check. 2. Go and see your doctor If we find problems with your breathing or lungs, the nurse may suggest you go and see your doctor. We will write to your doctor so they know about the check. 3. Offer you a lung cancer scan We will suggest you go for a lung cancer scan if we think you might get lung cancer in the future. 5 A scan is where we take pictures of the inside of your body. The nurse will help you to choose whether the scan is right for you. We will write to your doctor so they know about the check. Spirometry You might need to have to take a lung test before your scan. You will be asked to blow into a handheld machine called a spirometer to see how well your lungs are doing. 6 What is lung cancer? Lung cancer is one of the most common types of cancer. At the start, there are usually no signs that you have lung cancer. You won’t know that you have lung cancer. Finding cancer earlier means that it can be treated. We set up this lung health check so we can find and treat lung cancer early. All of your body is made up of tiny cells. A tumour is a lump of cancer cells. Lung cancer is when some of your cells grow to form a tumour in your lung. 7 What happens during a lung cancer scan? You will lie flat on your back on a bed that moves slowly into a machine called a scanner. The scanner is shaped like a donut and it will move around your chest as your body passes through it. Staff control the scanner from behind a screen. You can see and speak to them during the scan. You will need to lie still for about 10 seconds. The staff will tell you how to breathe during the scan. You won’t feel anything. You will be able to eat, drink or drive as normal after your scan. 8 Choosing to have a scan It’s up to you if you have a scan or not. Having a scan means that we are more likely to find problems early. If we find lung cancer early: It can be cured The treatment is simpler You are less likely to die It is better to find your lung cancer when it is small before it can spread. 9 What is the harm from a scan? Radiation A dose of radiation can cause harm. But we use a dose of radiation that is very low. A wrong result Scans can sometimes show wrong results. This might mean you would need more tests which can be worrying. 10 The results of your scan You will get your results within four weeks. We will write to you and your doctor with the results of the scan. The results may be: 1. We found nothing wrong We will write to you with the results and ask you to come back for another scan in two years. 3 out of every 4 people who have a scan have nothing wrong. 2. You need another scan This usually means that we saw something that we need to check again. We will write to you and your doctor and ask you to come for another scan. Usually it will be in 3 months time. 11 About 1 in every 6 people need to go for another scan. 3. Something wrong This means we have seen something and we want you to come for more tests. About 1 in every 12 people that we scan need to go for more tests. We will call you and write to the hospital so you can be seen by a doctor. Around half of the people who need more tests will have lung cancer. 12 4. Something else wrong There is no sign of lung cancer but the scan makes us think that you may have another problem. You may need to see your doctor or another doctor. We will write to you and your doctor. 13 Signs and symptoms of lung cancer You need to look out for anything unusual like: A cough that doesn’t stop Coughing up blood Being short of breath Getting very tired or losing weight An ache or pain when you breath or cough Not wanting to eat anything If you notice any of these things you should go and see your doctor. 14 Support to stop smoking The best thing to reduce your chances of getting lung cancer is to not smoke. If you do smoke and you would like to stop: Speak with your doctor Phone NHS Smokefree on 0300 123 1044 Go to: www.nhs.uk/smokefree 15 For more information If you need more information please contact: NHS Lung Cancer Information www.nhs.uk/conditions/lung-cancer Local TLHC Website https://www.uhs.nhs.uk/departme nts/blood-heart-andcirculation/lung-screening NHS Smokefree www.nhs.uk/smokefree Cancer Research UK www.cruk.org/lunghealthchecks www.cruk.org/about-cancer/lungcancer www.cruk.org/smoking Phone: 0808 800 4040 Roy Castle Lung Cancer Foundation www.roycastle.org/information www.roycastle.org/help-and-support Phone: 0333 323 7200 16
Url: /Media/UHS-website-2019/Docs/Services/TLHC/tlhc-easy-read-booklet.pdf

Good health care for all

Description: Good health care for all What can I expect from the NHS? Alison Giraud-Saunders February 2012 1 Who helped with this book Money for this book was given by the Department of Health’s Valuing People Now programme, which ended in March 2011 Mark Bradley, Health Facilitator Network Stephan Brusch, NHS London Sue Carmichael (when she worked at the Department of Health) Janet Cobb, UK Health and Learning Disability Network Marcella Cooper and friends: people with learning disabilities and family carers from Barking and Dagenham and from Maidstone Beverley Dawkins, Mencap Hanifa Islam, Foundation for People with Learning Disabilities Allyson Kent, Access to Acute Network Hannah Rutter (when she worked at the Department of Health) Christine Towers, Foundation for People with Learning Disabilities Sue Turner, Improving Health and Lives/National Development Team for Inclusion Claire Walsh, Mental Health Foundation Richard West, Self advocate Made with Photosymbols 2 What is in this book? 05 About this book 06 What is the NHS? 09 Looking after your health 14 Making decisions about your health 15 Using the NHS 18 Going to the doctor or nurse 3 24 Going to hospital for an appointment 30 Staying in hospital 38 How to get help in a hurry 40 Who can help you? 42 Where you can get more information 44 What some of the words mean 4 About this book This book is for people with learning disabilities, family carers and anyone who supports a person with learning disabilities. This book is to help you get a good service from the National Health Service (the NHS). The book is mainly about health services for people who are aged 18 or more. It is mainly about services from your family doctor (GP) and hospitals. Some health services are just for people with learning disabilities. They are usually in the Community Learning Disability Team. You can get good information from them. You may be able to get extra help from them if you need it. You might look at the book on your own. Or you can ask someone to look at the book with you and talk about what it says. You can look at everything in the book. Or you can look at one bit that is right for you. Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. 5 What is the NHS? Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. The NHS is made up of lots of different services. For example: - your family doctor (GP) and practice nurse – where you can get health checks and treatment when you are ill - optician (optometrist) – where you get eye tests and glasses (spectacles) - dentist – where you get your teeth and mouth checked - chemist (pharmacist) – where you can ask for health advice and get some medicines like headache tablets Here are some other NHS services your doctor or nurse might arrange for you: - health promotion – where you can get advice to help you with healthy living 6 - screening services – you might get asked by your doctor to have a special check that can find an illness like cancer very early, so it can be treated - community health services like the district nurse, podiatrist (foot care), Macmillan nurse (cancer) - audiology – where you can get your hearing checked and get hearing aids - services that just work with people with learning disabilities, like the Community Learning Disability Team – the team often includes health staff like learning disability nurses, physiotherapist, occupational therapist, speech and language therapist, psychologist, psychiatrist - mental health services (psychiatrist, nurse or psychologist) – help if you have a mental health problem - hospitals – where you go to have special health tests or see different doctors. Or you might have to stay in hospital for extra help 7 - children’s health services – school nurse, children’s doctor (paediatrician), mental health services for children and young people (CAMHS) - ‘transition’ teams for young people who are nearly adults – some areas have a special transition nurse if you have lots of different health needs All these services work under the NHS Constitution. This helps to make health services better and fair for everyone. You can get more information about the Constitution from this website: http://tinyurl.com/cgveofa The NHS has to follow the laws about being fair to everyone (the Equality Act 2010). For example, the NHS must try to make it as easy for disabled people as anyone else to use health services. This is called ‘making reasonable adjustments’. You can find more information from this website: http://tinyurl.com/cpvw6gx The rest of this book has lots of ideas about reasonable adjustments you can ask for. If you need some extra help, please ask someone! 8 Looking after your health Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. There are lots of things you can do yourself to look after your health. For example: - eating healthy food (like salads and vegetables) - taking exercise (like having a walk every day) - not smoking or drinking too much alcohol - getting health checks with your doctor, dentist and optician at least once a year - looking after your feet, especially if you have a health problem called diabetes - looking after the shape of your body (posture) 9 - cleaning your teeth at least twice a day - having a good wash every day (like a bath or a shower) It is important for family carers to look after their health too, including carers who have learning disabilities You can get help from the NHS to keep healthy. Here are some ideas about things you can ask for: - information in easy read - information about groups you can join, like walking exercise groups and groups to help people lose weight - information about where people with learning disabilities can go for dentists and opticians - regular checks of your ears if you get a lot of earwax 10 - information in big print and easy read about any medicines you have to take You can get a health check every year from your family doctor and practice nurse. This is a good idea to help you keep healthy. You can ask for a health check if you have not had one. A health check includes things like: - checking how tall you are and how much you weigh - tests for common health problems like high blood pressure - checking for different illnesses - checking what medicines you take. Lots of people like to have a Health Action Plan. If you have not got one, you can ask the Community Learning Disability Team about them. A Health Action Plan holds all the things that are important about your health. It also holds information about things you might do to keep you healthy. For example, you might decide you want to lose some weight. Then you would put in your Health Action Plan how you are going to do that and who will help you. Lots of places have a person called a Primary Care Liaison Nurse. (Sometimes they are called a Health Facilitator). They may work in the Community Learning Disability Team. You can ask them to help you to think about your health. You can also ask them for help with getting health care, from your doctor or the hospital. 11 Here is an example of a Health Action Plan: Sharifa’s Health Action Plan Sharifa has a health problem called diabetes. Her plan says: - I will not eat sweets or cakes. My friend Hanifa will help me to stay away from those shelves in the shop - I will get some easy read information on healthy eating for people with diabetes. The diabetes nurse will help me with this - The diabetes nurse will make sure I get my blood, feet and eyes checked regularly - Sue, the practice nurse, will help me make all these appointments. She will text me the day before each appointment to remind me to go - The diabetes nurse will help me join a group of other people who have diabetes so we can support and learn from each other. Sharifa helps to look after her mum, who has diabetes too. So Sharifa’s plan also says: - I will make a plan with Sue, the practice nurse, for things I need to do to help my mum keep healthy - Sue will help me ask for a carer’s assessment from Social Services. 12 Websites where you can get more useful information - Lots of easy read information about health: www.easyhealth.org.uk - Information about eyes: http://www.lookupinfo.org/ - Information about healthy eating (not easy read): http://tinyurl.com/cvjr2p6 - Information about Health Action Plans: http://tinyurl.com/dymv5c6 - Information about looking after body shape (posture): http://tinyurl.com/cb898km - Lots of information about health and health care: NHS Choices website (not easy read) http://tinyurl.com/c38t54 - Information about health checks: Health Screening Template Part one http://tinyurl.com/ckzowyf 13 Making decisions about your health ‘Mental capacity’ means being able to make decisions for yourself. There is a law called the Mental Capacity Act. It says you should get help if you need it to make a decision for yourself. A doctor or another health worker might ask you to consent to some treatment for your health. This means asking you to say yes or no. You can do this if you can make the decision yourself. Sometimes it is very hard to make a decision yourself about your health. You might need a doctor or another health worker to make a decision for you. If a doctor or another health worker makes a decision for you, they must make a decision in your ‘best interests’. This means doing what is right for you. They should talk to you and to people who know and care about you to find out what is right for you. There is an easy read leaflet about the Mental Capacity Act. You can get it from this website: http://tinyurl.com/c5h9e2v 14 Using the NHS Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. There are some important things that people with learning disabilities say about using any bit of the NHS. And there are some things you can ask for that might help you! It is your right to ask for help like this. Services should try hard to make changes like these. They are called reasonable adjustments. These are just a few ideas. Maybe they will get you thinking of more things that would help. It is a good idea to tell them you have a disability, so they know you might need some extra help. You can get an easy read book called “Questions to ask when you go to the doctor or to a hospital”. You can get it from this website: http://tinyurl.com/6e4nknd Lots of family carers and carers with learning disabilities also say: - Health staff try hard to listen to the person with learning disabilities. That is good, but they need to listen to me too. Sometimes I know things about my son or daughter that the doctor needs to know. It may help to write things down before you see the doctor or nurse. 15 16 Things people say are hard I cannot understand the letters they send me Ideas that might help you Ask them to use easy read when they write to you. Or you could ask them to phone you or send a text message It is difficult to make an appointment. The phone system is too hard! And I cannot use the computer Ask if there is a phone number you can ring that goes straight to the receptionist The receptionist is not very helpful Before you go, think about what you want to say. Be polite but firm. Ask them to help or ask someone to help you write down what you want I find waiting difficult. If I come at the right time, I do not want to have to wait in a crowded room Ask if you can have the first appointment, or the last one when most people have left. Ask if there is somewhere private you can wait I sometimes miss my appointment time because I do not hear the receptionist call my name. There are lights that flash too, but I do not know what they mean Ask the receptionist to come over and tell you when to go in Things people say are hard Ideas that might help you Everyone is in too much of a hurry. I need some time to think what to say Ask for a longer appointment, maybe at the end of the day. This is called a “double appointment” They do not have the right equipment to help me in and out of my wheelchair Ask them to make sure they have the right equipment. Write down what equipment you need so they know what to have ready I have asked for help, but nothing has changed Tell them the law says they should make ‘reasonable adjustments’ for disabled people. Ask for a leaflet about ‘how to complain when you are not happy’. Remember, you can ask for this in easy read! 17 Going to the doctor or nurse Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. There are some important things that people with learning disabilities say about going to the doctor or nurse. And there are some things you can ask for that might help you! It is your right to ask for help like this. Services should try hard to make changes like these. They are called reasonable adjustments. These are just a few ideas. Maybe they will get you thinking of more things that would help. It is a good idea to tell them you have a disability, so they know you might need some extra help. You might like to look first at the ideas about using any bit of the NHS. Some of those ideas might help with going to the doctor – like making an appointment. You can get an easy read book called “Questions to ask when you go to the doctor or to a hospital”. You can get it from this website: http://tinyurl.com/6e4nknd 18 Things people say are hard It is a bit scary going to the doctor I really cannot go to the surgery. It is too difficult for me Ideas that might help you Ask if you can visit the surgery (where the doctor works) when it is quiet. You could look at the room where you will see the doctor. You could look at equipment like: - the machine that the nurse uses to check your blood pressure - scales to check your weight - the bed the doctor may ask you to lie on to look at part of your body You may be able to ask the doctor to visit you at home. It is not easy for them to do this. They will only agree if it is really difficult for you to go to them because of your health problems or disability The doctor speaks to my mum or my support worker instead of me. They do not try to understand what I have to say Before you go, think about what you want to say. You could take your Health Action Plan to show the doctor. Be polite but firm – you could say: “I am the one you need to talk to” 19 20 Things people say are hard The doctor speaks too fast and uses long words Ideas that might help you Ask them to slow down and use easy words. Ask for information in easy words to take away, so you can take it in at your own pace I need a longer time to say what I want to say and to understand what the doctor is saying Ask for a longer time (“double appointment”) when you make your appointment. Ask for information in easy words to take away, so you can take it in at your own pace Sometimes there are things I want to ask that are private. I do not want to ask while my mum is there Ask to see the doctor or nurse on your own. You can agree with them what will be kept private Every time I go, I see a different person. I have to explain all over again Ask to see the same doctor or nurse each time. You could take your Health Action Plan to show them too Here is an example of making an agreement with your doctor: Earl’s agreement with his doctor’s surgery It is important for Earl to know exactly what is happening. Earl gets very upset if he has to wait without being kept informed. Earl’s support worker helped him make an agreement with the doctor’s surgery. This helps Earl know what to expect, and also what he needs to do: - You will give me an appointment the same day or the next day if you can. If you cannot do this, I will know you have done your best - You will tell me exactly what time to come. I will be there. You will do your best to see me at that time. If you cannot do this, you will tell me how long I have to wait. I will do my best to keep calm - You will try to make sure I see the same doctor each time - You will give me time to say what I need to say or to ask questions. I may ask my support worker to say some things for me - I will bring my Health Action Plan to remind you what is important to me - If you need to talk to my mum about my health, you will ask me first and tell me why you need to do this - You will talk to me and use easy words - You will ask if I would like to take information away with me, in easy words - You will tell me what will happen next 21 Lots of family carers and carers with learning disabilities also say: - The doctor and nurse try hard to listen to the person with learning disabilities. That’s good, but they need to listen to me too. Sometimes I know things about my son or daughter that the doctor needs to know - My son or daughter can decide some things, if they are explained very carefully. Or a big decision might have to be made by the doctor, after talking to all of us who know my son or daughter well. This is called ‘best interests’. Sometimes I have to remind the doctor about the Mental Capacity Act. You can get more information about the Mental Capacity Act at this website: http://tinyurl.com/bvueljs Here is a link to a flowchart about ‘best interests’ decisions: http://tinyurl.com/cc96w4f Family carers can ask their son or daughter’s doctor or nurse to include them properly. This might mean having an appointment at a time that is right for the family carer. 22 Lots of doctors and nurses also say: - It’s really hard to know what to do if a person with learning disabilities can’t tell me what’s wrong and the support worker is from an agency and doesn’t know anything! - I’m not sure if I explain everything well enough, so the person will know what to do - I’m not sure how much to tell the person’s family or support workers - I’d like some help to find easy read information about common health problems Doctors and nurses can ask their local Community Learning Disability Team or Learning Disability Primary Care Liaison Nurse for help. There is easy read information about common health problems at these websites: www.easyhealth.org.uk http://tinyurl.com/5rkdcvf www.changepeople.co.uk 23 Going to hospital for an appointment Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. There are some important things that people with learning disabilities say about going to hospital for an appointment. And there are some things you can ask for that might help you! It is your right to ask for help like this. Services should try hard to make changes like these. They are called reasonable adjustments. These are just a few ideas. Maybe they will get you thinking of more things that would help. It is a good idea to tell them you have a disability, so they know you might need some extra help. You might like to have a Hospital Passport. This is a book to hold important information about you and your health. Sometimes the book is called different things (like Hospital Book or Patient Passport). You can see some Hospital Passports on this website: http://tinyurl.com/bmtzbdz You might like to look first at the ideas about using any bit of the NHS. Some of those ideas might help with going to hospital – like asking for easy read letters or extra time. You can get an easy read book called “Questions to ask when you go to the doctor or to a hospital”. You can get it from this website: http://tinyurl.com/6e4nknd 24 Things people say are hard My own doctor knows me well and knows how to make things easy for me. Will the hospital know this too? I need to have several different tests, but it is difficult for me to keep travelling to the hospital Ideas that might help you Ask your doctor to tell the hospital what help you need, before you go. You can take your Communication Passport or Hospital Passport if you have one. (Sometimes these are called different names) Ask if the hospital has an ‘acute liaison nurse’. This is a nurse who tries to make things in hospital easier for people with learning disabilities. Or you can ask for the ‘safeguarding’ nurse Talk to someone at the hospital before the day of your appointment to let them know if you need any special arrangements Ask if all the tests and appointments can be on the same day Ask if you can have help with travel to the hospital It is quite scary going to hospital and having tests Ask if you can have some information to look at before you go. This could be in easy read, or perhaps a DVD Ask someone you trust to help you look at the information and think about the questions you want to ask Ask if you can visit the hospital before you go for the proper test. You could ask to see the room where you will be seen, or the machine that might be used for a test Ask if they can advise you about how to relax. There might be exercises you can do to help you be less anxious 25 26 Things people say are hard It is quite hard to find your way around at the hospital It can be hard to understand what doctors are talking about Ideas that might help you Ask if there are ‘buddies’ (people who can help you find your way round). Or visit the hospital before your appointment day so you can figure out how to get around the hospital. Most hospitals have ‘help’ desks where you can ask for help like this. Ask them before you visit and they may be able to help you to find your way on the day of your appointment Ask them to slow down and use easy words. Ask for information in easy words to take away, so you can take it in at your own pace Ask questions about the results of the tests – what do they mean? Ask questions about the choices for treatment – what is good or bad about them? I do not understand the information they Ask for information in easy read send after I have had tests Ask to have someone explain the test results to you Here is an example about visiting hospital: Earl’s excellent visit to hospital The doctor said Earl needed to have some tests at the hospital. Earl felt quite nervous about that. His doctor talked to him about the tests and gave Earl some information in easy words and pictures. The doctor said he would write to the hospital and tell them that Earl had a learning disability and would need some extra help. Earl’s support worker, Jason, helped him look at the easy read information and they talked about what it meant. Earl asked Jason to phone the hospital to talk about the help Earl would need. Jason did this and was put through to the Acute Liaison Nurse, Ellie. Ellie said she would help make special arrangements for Earl. The hospital arranged for all Earl’s tests to be done on one day. They sent him a DVD with more information about the tests. They sent him a text the day before, to remind him what time to arrive. When Earl arrived at the hospital he was met by a ‘buddy’. This person was a volunteer at the hospital. She helped Earl get to the right places at the right times. The hospital staff who did the tests all knew that Earl needed some extra help to understand what was happening. They talked to him in easy words. They checked that he agreed to the tests. They let him look around and settle before doing the tests. The last person Earl saw for tests gave him a big card to remind Earl to make an appointment with his own doctor, to talk about the test results. After all the tests were done Earl’s ‘buddy’ helped him find his way back to the hospital entrance, where Jason was waiting for him. Earl said: “Everything worked right!” 27 Lots of family carers and carers with learning disabilities also say: - The doctor and nurse try hard to listen to the person with learning disabilities. That is good, but they need to listen to me too. Sometimes I know things about my son or daughter that the doctor needs to know - My son or daughter can decide some things, if they are explained very carefully. Or a big decision might have to be made by the doctor, after talking to all of us who know my son or daughter well. This is called ‘best interests’. Sometimes I have to remind the doctor about the Mental Capacity Act. You can get more information about the Mental Capacity Act at this website: http://tinyurl.com/bvueljs Here is a link to a flowchart about ‘best interests’ decisions: http://tinyurl.com/cc96w4f 28 Family carers can ask the hospital to include them properly. This might mean having an appointment at a time that is right for the family carer. Lots of doctors and nurses also say: - It’s really hard to know what to do if a person with learning disabilities can’t tell me what’s wrong and the support worker is from an agency and doesn’t know anything! - I’m not sure if I explain everything well enough, so the person will know what to do - I’m not sure how much to tell the person’s family or support workers - I’d like some help to find easy read information about common health problems. Doctors and nurses can ask their local Community Learning Disability Team or Learning Disability Primary Care Liaison Nurse for help. There is easy read information about common health problems at these websites: www.easyhealth.org.uk http://tinyurl.com/5rkdcvf www.changepeople.co.uk 29 Staying in hospital Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. There are some important things that people with learning disabilities say about staying in hospital. And there are some things you can ask for that might help you! It is your right to ask for help like this. Services should try hard to make changes like these. They are called reasonable adjustments. These are just a few ideas. Maybe they will get you thinking of more things that would help. It is a good idea to tell them you have a disability, so they know you might need some extra help. You might like to look first at the ideas about using any bit of the NHS, or going to hospital. Lots of things people say about going to hospital are the same as they say about staying in hospital. So you can try out some of the same ideas that might help – like asking for easy read letters or extra time. 30 Things people say are hard I am really picky about what I eat. I might get upset if I am given the wrong food I need people with me who know me well Ideas that might help you You can put this in your Hospital Passport, if you have one. (Sometimes these are called different names) It is a good idea to talk to someone at the hospital about this before you go in to stay. Ask to talk to PALS or the Acute Liaison Nurse. Or the ‘safeguarding’ nurse Take a food plan into hospital Ask if your family can stay with you in hospital, or your support worker if you have one I need help to eat and drink. If I do not get help, I might choke. Or I might not have any food or drink You can put this in your Hospital Passport, if you have one. (Sometimes these are called different names) It is a good idea to talk to someone at the hospital about this before you go in to stay. Ask to talk to PALS or the Acute Liaison Nurse. Or the ‘safeguarding’ nurse I know what is important to me, but I need a lot of help to make people understand me You can have a Hospital Passport or a Communication Passport. This can tell people about how you tell them what you want. (Sometimes these are called different names) 31 32 Things people say are hard I need a lot of help to understand what is happening Ideas that might help you You can have a Hospital Passport or a Communication Passport. This can tell people how they should give you information. (Sometimes these are called different names) I can make decisions about my health if things are explained with easy read. You need to give me time to understand I know there are some big decisions that are too hard for me You can have a Hospital Passport or a Communication Passport. This can tell people how they should give you information. (Sometimes these are called different names) You can ask people who know you well to help the hospital doctors and nurses to make good decisions for you. This is called ‘best interests’ I need a lot of help with personal care You can put this in your Hospital Passport, if you have one. (Sometimes these are called different names) It is a good idea to talk to someone at the hospital about this before you go in to stay. Ask to talk to PALS or the Acute Liaison Nurse. Or the ‘safeguarding’ nurse Things people say are hard I do not feel very safe in a ward with other people I find being in a noisy ward very difficult. I get upset Ideas that might help you It is a good idea to talk to someone at the hospital about this before you go in to stay. Ask to talk to PALS or the Acute Liaison Nurse. Or the ‘safeguarding’ nurse. They might suggest you stay in a “side ward”. This is a room off the main ward It is a good idea to talk to someone at the hospital about this before you go in to stay. Ask to talk to PALS or the Acute Liaison Nurse. Or the ‘safeguarding’ nurse. They might suggest you stay in a “side ward”. This is a room off the main ward It is important that you understand what help I will need when I leave hospital I want to know what will happen next! Ask about plans for you leaving hospital. You might need to keep taking some medicine. You might need some extra help at home for a while. You can ask the hospital staff to talk to your family or your support staff about this too. Ask for information in easy read. If you need to go for a check-up, ask for help to make the appointment 33 You can get an easy read book called “Questions to ask when you go to the doctor or to a hospital”. You can get it from this website: http://tinyurl.com/6e4nknd Here is an example about staying in hospital: Michael’s good stay in hospital Michael was born with a health problem called Tuberous Sclerosis. This means he has quite a few health problems. He has complex epilepsy (fits) and his kidneys are not working properly. Michael does not speak, but he loves to join in with whatever is going on in his noisy family! Michael lives with his family and gets support from two Personal Assistants. Michael’s family were worried when they heard he would have to go to hospital and stay there for an operation. Michael had a bad time when he had to stay in hospital before. This time the Community Learning Disability Team asked their Primary Care Liaison Nurse, Sam, to work with Michael, his family and the hospital to make a plan for his stay. Sam came to Michael’s house to meet him and his family and Personal Assistants. They talked about what had gone wrong last time, and what Michael would need this time. Sam helped them to make a Hospital Passport for Michael. They wrote down all the things that were important to Michael, like how to help him relax. They wrote down all the things that were important to keep Michael safe, like how to help him to eat without choking. Sam went to talk to the Acute Liaison Nurse at the hospital. They looked at Michael’s Hospital Passport together. They talked about all the arrangements that would be needed to make Michael’s stay a success. Staff on the ward thought Michael should go into a side room. Sam thought Michael might like the main ward better, as there was more going 34 on. Staff on the ward were worried that they would not have enough time to support Michael well at important times like mealtimes. Sam said the hospital should pay for one of Michael’s Personal Assistants to go in to support him. The hospital did not want to do this at first. The Acute Liaison Nurse talked to the Patient Advice and Liaison Service (PALS) and persuaded them to agree. On the day that Michael went into hospital the Acute Liaison Nurse met him and his family on the ward. Michael met his ‘named nurse’ from the ward team. He gave her his Hospital Book. She agreed to tell the other nurses how important it was to support Michael using all the information in his Hospital Passport. She agreed to speak to Michael’s family every day. She made a plan with Michael’s Personal Assistant, to agree who would do what. The Personal Assistant showed her how to talk to Michael while she was working with him. Before Michael’s operation all the doctors and nurses got together to make sure they had a good plan for him. They invited his family and the Acute Liaison Nurse. They made sure everyone agreed that the operation was in Michael’s best interests. They talked about how to make sure Michael was supported while he waited for the drug (anaesthetic) to put him to sleep before the operation, and while he was waking up after the operation. They talked about what would happen after the operation, and what Michael and his family would need when he went home. The operation went OK, but that night the nurses were worried about Michael. They called his family and his mum came to the hospital. They offered her a comfy chair by Michael’s bed and a cup of tea. They checked during the night to see if she wanted anything else, and made sure she knew where the toilets were. They gave her a pass for the car park. In the morning Michael was a bit better. The Acute Liaison Nurse popped in every day to make sure things were going OK. Before Michael was due to go home she got everyone together again and they went through all the plans. They agreed who would sort out some new equipment 35 Michael would need at home. They agreed who would speak to the district nurse about checking on him at home. They arranged some training for Michael’s family and Personal Assistant about the new equipment. They fixed a date for Michael to come back for a check-up. Michael’s family were really pleased with how this stay in hospital went. They said a big ‘thank you’ to all the hospital staff. Lots of family carers and carers with learning disabilities also say: - The doctor and nurse try hard to listen to the person with learning disabilities. That is good, but they need to listen to me too. Sometimes I know things about my son or daughter that the doctor needs to know - My son or daughter can decide some things, if they are explained very carefully. Or a big decision might have to be made by the doctor, after talking to all of us who know my son or daughter well. This is called ‘best interests’. Sometimes I have to remind the doctor about the Mental Capacity Act - The hospital seem to assume that I or a support worker will come and look after my son or daughter. They need to talk to us about what is possible and reasonable! - I have needs as a carer. If I need to stay with my son or daughter, the hospital should help me with parking, somewhere to rest and access to food and drinks You can get more information about the Mental Capacity Act at this website: http://tinyurl.com/c8g2bzn Here is a link to a flowchart about ‘best interests’ decisions: http://tinyurl.com/d7w4t6v 36 There is a guide for families and hospitals about supporting people with learning disabilities in hospital. You can find it at this website: http://tinyurl.com/bwocmba Lots of doctors and nurses also say: - It’s really hard to know what to do if a person with learning disabilities can’t tell me what’s wrong and the support worker is from an agency and doesn’t know anything! - I’m not sure if I explain everything well enough, so the person will know what to do - I’m not sure how much to tell the person’s family or support workers - I don’t know how much I can ask the person’s family or support workers to help them while they are in hospital - I’d like some help to find easy read information about common health problems - I’m not sure what help the person will get when they leave hospital Doctors and nurses can ask their local Community Learning Disability Team for help. There may be an Acute Liaison Nurse in the hospital. There is a guide for hospitals and families about supporting people with learning disabilities in hospital: http://tinyurl.com/bwocmba There is easy read information about common health problems at these websites: www.easyhealth.org.uk http://tinyurl.com/5rkdcvf www.changepeople.co.uk 37 How to get help in a hurry Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. Sometimes you need to get help with a health problem in a hurry. Here are some things you can do: - You might be able to get some advice from the chemist (pharmacist). They might be able to suggest some treatment if they do not think you need to see a doctor - You could ring NHS Direct to ask for advice: 0845 4647. Or look on their website: http://www.nhsdirect.nhs.uk/ (not easy read) In a few places there is a new number you can call (111). It should work everywhere by 2013 - Your doctor’s surgery might have a phone number you can call for advice even when the surgery is not open (‘out of hours’) - In some cities there are NHS ‘walk in centres’ that you can go to any time for health care - Some hospitals have ‘minor injuries units’ where you can go for treatment if you are hurt (like if you have cut your finger and it will not stop bleeding) 38 - You might have to go to a hospital Accident and Emergency Department (A&E) if you are hurt very badly - If someone has a bad accident, or a sudden bad illness like a heart attack or a stroke, you might need to phone or text 999 for an ambulance. If you need an ambulance, the staff will have to ask you lots of questions. Good ideas The London Ambulance Service uses a book called the “Pre Hospital Communication Guide” with easy read pages. You could ask your local ambulance service if they have something like this. You can give them this website address: http://tinyurl.com/cnxtwbf If you have a mobile phone, save the telephone number of someone who can be phoned in an emergency. Save the number with the name ICE. This means ‘In Case of Emergencies’. Ambulance staff and police all know what this means. Some people have health problems that are important to know about in an emergency. For example, some people must not be given a drug called penicillin. People can wear a bracelet or a pendant (‘MedicAlert’) that has details about their health problems. 39 Who can help you? Some words to do with health and the NHS are a bit hard. Harder words are shown like this: NHS Constitution. There is a list of these words at the back of the book to tell you what each word means. If you have a question about your health, you can ask a health person you know (like your doctor or nurse). You can get some advice about health from your chemist (pharmacist). And there is more from the website NHS Choices and the phone line NHS Direct. (These are not easy read). Here are some other ideas about people you can ask: - Community Learning Disability Team: you may already know some people from the Team, like a learning disability nurse. If you don’t know anyone there, you can get contact details for the Team from Social Services - Health Facilitator: this is a person who helps you think about your health. They can help you make a Health Action Plan. Sometimes they are called different things. You can usually find the right person through the Community Learning Disability Team - Patient Advice and Liaison Service (PALS): every hospital has a PALS. They can give you information about health care and the NHS 40 - Acute Liaison Nurse: this is a nurse who tries to make things in hospital easier for people with learning disabilities. Not every hospital has one. You can find out if your hospital has one through the Community Learning Disability Team or through PALS - Safeguarding Nurse: most hospitals have a nurse who is responsible for making sure that people are safe from harm while they are in hospital - HealthWatch: this service will start in 2012 (it is being tried out in some areas sooner than this). HealthWatch will help people get information about health services. They will also collect information about how good or bad local services are. If you are unhappy about your health care, some services are there specially to help: - Patient Advice and Liaison Service (PALS): every hospital has a PALS. They can help if you are unhappy with the hospital services. They can help you if you want to complain - Independent Complaints Advocacy Service: this service is completely separate from the NHS. They can help you make a complaint. You can get in touch with them through PALS - Patients Association: this is a charity that is quite separate from the NHS. They have a helpline you can call. The number is 0845 608 4455 41 Where you can get more information Books Beyond Words: books for people with learning disabilities. Some of the books are about health problems http://www.picturesbeyondwords.com CHANGE: an organisation that works for the human rights of people with learning disabilities. CHANGE has some easy read information about health www.changepeople.co.uk Easyhealth: a website with lots of easy read information about health problems and health care www.easyhealth.org.uk Foundation for People with Learning Disabilities: an organisation that works with health services to help them get better www.learningdisabilities.org.uk General Medical Council: learning disability resources launched in Spring 2012 www.gmc-uk.org/learningdisabilities Health checks: Your Say Advocacy Service are launching a DVD about health checks in Spring 2012. Email: info@yoursayadvocacy.co.uk Improving Health and Lives: a website with lots of information about the health of people with learning disabilities www.improvinghealthandlives.org.uk Leeds Animation Workshop: two DVDs and easy read books about going to the doctor and going to hospital http://www.leedsanimation.org.uk/index.html Look Up: a website with lots of information from SeeAbility about looking after your eyes http://www.lookupinfo.org 42 Mencap: an organisation that campaigns for better health care for people with learning disabilities www.mencap.org.uk NHS Choices: a website with lots of information about health and health care www.nhs.uk A picture of health: a website with easy read information about health and health care in South West England www.apictureofhealth.southwest.nhs.uk/ PRODIGY: a website with lots of information about health problems and health care www.prodigy.clarity.co.uk Postural Care Campaign: a web page about how to get better care for people who need a lot of help to protect the shape of their bodies http://tinyurl.com/cb898km Reasonable adjustments: examples of changes the NHS can make www.ihal.org.uk/adjustments Royal College of General Practitioners: learning disability resources for GPs http://tinyurl.com/d747vaz UK Health and Learning Disability Network: an email network of people all over the country who are interested in the health of people with learning disabilities www.jan-net.co.uk 43 What some of the words mean Acute liaison nurse: a nurse who works in hospital to try to make things easier for people with learning disabilities Audiology: the service that does hearing tests and can give out hearing aids Best interests: deciding what is right for a person if they cannot make the decision for themselves CAMHS (Child and Adolescent Mental Health Service): the service that helps children and young people if they have mental health problems Carer’s assessment: a check to see what help you need if you are caring for another person Communication passport: a book about how you let people know what you want, and how they should talk to you Community Learning Disability Team: a team of health workers and social workers who just work with people with learning disabilities Consent: saying yes or no to a health test or treatment District nurse: a nurse who helps people at home, like giving an injection GP: a family doctor Health Action Plan: a plan about all the things that are important for your health Health facilitator: someone who can help you think about your health 44 Health promotion: a service that teaches people about looking after their health Hospital passport: a book with important information about you and your health that you can take to hospital Learning disability nurse: a nurse who just works with people with learning disabilities Macmillan nurse: a nurse who helps people who have cancer Mental capacity: being able to make decisions for yourself Mental Capacity Act: the law about making decisions NHS Constitution: the ground rules for the NHS, to help make health services better and fair for everyone Occupational therapist: a health worker who helps people learn to do the things they want to do, at home or at work or out and about Optometrist: a health worker who does eye tests and gives out glasses (spectacles) Paediatrician: a children’s doctor PALS (Patient Advice and Liaison Service): a service that can give you information about the NHS and help you if you have problems using the NHS Pharmacist: a health worker who knows about medicines Physiotherapist: a health worker who knows about how bodies move 45 Podiatrist: a health worker who knows about looking after feet Posture: the way you sit, stand or lie. This is important for keeping healthy Primary care liaison nurse: a nurse who helps family doctors and other nurses to give good services to people with learning disabilities Psychiatrist: a doctor who knows about mental health problems Psychologist: a health worker who knows about behaviour and how people’s minds work Reasonable adjustments: changes that the NHS and other services can make, to make it easier for disabled people to use the services Safeguarding nurse: a nurse who helps NHS services think about how to keep people safe from harm Screening: tests for cancer Speech and language therapist: a health worker who helps people who have difficulty speaking or being understood. They also help people who have difficulty swallowing Transition: moving from services for children and young people to services for adults 46 47 Foundation for People with Learning Disabilities Colechurch House 1 London Bridge Walk London SE1 2SX United Kingdom Telephone 020 7803 1100 Fax 020 7803 1111 Email info@fpld.org.uk Website www.learningdisabilities.org.uk Registered Charity No. England 801130 Scotland SC039714 © Foundation for People with Learning Disabilities 2012 changing liv48 es
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