Improving Services for Patients with Learning Difficulties. Jennifer Robinson, Lead Nurse Older People and Vulnerable adults

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1 ENC 5 Meeting Trust Board Date 18 th December 2014 Title of Paper Lead Director Author Improving Services for Patients with Learning Difficulties Kathryn Halford, Director of Nursing Jennifer Robinson, Lead Nurse Older People and Vulnerable adults PURPOSE OF THE PAPER The report is provided to the Trust Board to highlight how adults with a learning disability and their carers are supported within Walsall healthcare NHS Trust. SUMMARY OF THE KEY POINTS It has been identified that acute hospital services need support in recognising and responding to the needs of people with learning disabilities. Valuing People (2001) clearly states: Mainstream secondary health services must be accessible for people with learning disabilities. The Six Lives report details incidences of shortfalls in acute care which contributed to the death of 6 adults with a learning disability and the subsequent Healthcare for all reinforced the need for acute Trusts to have an acute learning disabilities liaison nurse. Walsall Healthcare NHS Trust identified key issues and implemented several strategies adapted to local needs which began with the Introduction of a Band 6 Acute Liaison Learning Disability Liaison Nurse. The Six Lives action plan used a framework to develop work around meeting the needs of adults with a learning disability. This includes, education and training, reasonable adjustments, electronic flagging, easy read information and seeking service user views. RECOMMENDATIONS 1. NOTE the contents of the report Page 1

2 LINKS Strategic Objectives First Class Patient Experience; Engaged & Empowered Workforce Annual objectives Improve the patient experience Monitor / CQC / Regulatory Requirements IMPACT National patient survey results Patient Experience Progress with For One & All programme Quality & Safety Financial Workforce Progress with For One & All programme Equality & Diversity Ensuring reasonable adjustments are made to ensure equal access to services Estates IM&T Ability to develop electronic flagging system Communications / Engagement RISKS Poor health outcomes for adults with a learning disability PREVIOUS CONSIDERATION None. Page 2

3 REPORT TO THE TRUST BOARD 18 TH DECEMBER 2014 IMPROVING SERVICES FOR PATIENTS WITH LEARNING DIFFICULTIES 1.0 Introduction The Department of Health document Healthcare for All 2008 informs us that the health and strength of a society can be measured by how well it cares for its most vulnerable members. For a variety of reasons, including the way society behaves towards them, adults and children with learning disabilities, especially those with severe disability and the most complex needs are some of the most vulnerable members of our society today. They also have significantly worse health than others. The Inquiry has found convincing evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment, despite the fact that the Disability Discrimination Act and Mental Capacity Act set out a clear legal framework for the delivery of equal treatment. People with learning disabilities find it much harder than other people to access assessment and treatment for general health problems that have nothing directly to do with their disability. There is insufficient attention given to making reasonable adjustments to support the delivery of equal treatment, as required by the Disability Discrimination Act. Adjustments are not always made to allow for communication problems, difficulty in understanding (cognitive impairment), or the anxieties and preferences of individuals concerning their treatment. Parents and carers of adults and children with learning disabilities often find their opinions and assessments ignored by healthcare professionals, even though they often have the best information about, and understanding of, the people they support. Health service staff, particularly those working in general healthcare, have very limited knowledge about learning disability. The health needs, communication problems, and cognitive impairment which are characteristics of learning disability in particular are poorly understood. Staff are not familiar with what help they should provide or from whom to get expert advice. Partnership working and communication (between different agencies providing care, between services for different age groups, and across NHS primary, secondary and tertiary boundaries) is poor in relation to services for adults with learning disabilities. In a response to the Healthcare for All documents (2008) there was a focus on ensuring that each acute trust had an acute learning disabilities liaison nurse. It was anticipated that this role would significantly improve the health outcomes for adults Page 3

4 with a learning disability and minimise the risk of a reoccurrence of the death of 6 adults referenced in the MENCAP report death by indifference (2007). Walsall Healthcare NHS Trust has a learning disability acute liaison nurse who is part of Walsall Healthcare facilitation team. The team comprises of: 1 Band 7 Strategic Health Facilitator 1 Band 6 Health Facilitation Nurse 1 Band 6 Acute Liaison Nurse The team sits within the Black Country Foundation Partnership Trust but Walsall Healthcare hosts and part funds the acute liaison nurse. 2.0 First Class Patient Experience Key focus of the learning disabilities acute liaison nurse role is ensuring that staff consider and facilitate reasonable adjustments for this client group. The complex needs of this client group also require staff to be skilled and competent in meeting their care needs. The impact of the role has certainly improved the outcomes for clients with a learning disability. The learning disability acute liaison nurse based in the Manor Hospital provides support for patient with learning disabilities who have complex and enduring needs, accessing both inpatient and outpatient services. The following are extracts from people with a learning disability who have accessed Walsall Healthcare and have been consulted about their experiences through focus groups: Planning for a hospital admission with the acute liaison nurse really helped me and my son. He was originally seen at another local hospital that did not have a liaison nurse so his procedure was unsuccessful and it was a terrible day for us all. With her help at the Manor Hospital the procedure was successful and not stressful How do I fill in hospital forms when I cannot read and write? I came to Walsall Manor A & E but had to wait 3 hours before someone came to see me I fell at home and had to go to A & E. I was told I needed a scan of my head. I was so scared. I did not know what was going to happen Adults with a learning disability inform us that they perceive the following to be barriers to accessing the hospital: Acute liaison nurse only currently available business hours The hospital does not identify who has a learning disability on their electronic system Not all forms are accessible Page 4

5 Not all information is accessible Busy waiting rooms Long awaiting time The diagram below details the level of importance place on identified solutions: All of these solutions will ensure that we deliver safe, high quality care and meet our promises to our patients so that theory feel Welcomed, Cared for and In safe Hands (Appendix 1). 3.0 Safe High Quality Services 3.1 Health Action Planning Health Action Planning is not the sole responsibility of one team, but requires integrated, joint working practice and dedication from all services involved in commissioning and providing care to people with learning disabilities both in Walsall and across the Black Country Partnership. The Health Facilitation team in Walsall are striving to promote the benefits of health Action Planning to all health and social care professionals. Walsall Learning Disability services have developed a Health Action Plan (A5 purple folders) which can be offered by all services involved in the care of people with learning disabilities.the Health Action Plan (purple folder) includes clear guidelines in developing a Health Action Plan. The A5 booklet My Health Check supports the person to have a health check. Page 5

6 People with learning disabilities experience diagnostic overshadowing : that is, reports of physical ill health being viewed as part of their learning disability and so not investigated or treated appropriately. This group of people are 4 times more likely to have a preventable cause of death than the general population and 58 times more likely to die before the age of 50. Health Facilitation in Walsall is ensuring that everyone with a learning disability has the opportunity to start a Health Action Plan if they want one. The success of this will depend on all services working together to initiate and monitor Health Action Planning effectively. Over 600 plans have been issued to people with learning disabilities in Walsall. 3.2 Hospital passports The acute liaison nurse completes a hospital passport for any adult admitted into acute care. The health facilitation team are supporting carers in the community to complete a passport so that it travels with the patient as they access health care. 3.3 Easy read information Hospital systems and staff should make reasonable adjustments around communication, easy read information and preparation for admission and appointment systems. The liaison nurse has supported the Development of an accessible, easy read booklet on being admitted into hospital. In addition, discussions continue to ensure the most appropriate way to move forward. In relation to receiving easy read appointment letters, additional work with neighbouring authorities is ongoing to identify who have progressed with this work. Communication tools are also available within wards and departments across the acute part of the organisation. 3.4 Reasonable adjustments The acute liaison nurse has been very active in scheduling monthly de-sensitisation visits for adults with a learning disability. These visits are made up of a full tour of the hospital and it gives adults with a learning disability the opportunity to meet health staff, clinical and non-clinical. This will minimise the persons anxiety levels if they have to access health care whether it be a planned our emergency admission. In addition to group visits, the liaison nurse supports clients on a one to one basis over a number of weeks leading up to the diagnostic and outpatient appointments, particularly through imaging, scans, blood tests etc. Service user feedback to the team has been very positive and more adults with a learning disability are accessing health care services by attending appointments. The team have acknowledged that more quantitative evidence is required to substantiate this feedback. Page 6

7 3.5 Electronic flagging The development of an electronic flagging system on the patient information system to ensure that patient s progress through the hospital can be followed is a recommendation from six lives. An electronic alert to identify adults with a learning disability will allow early and more timely contact with the acute liaison nurse. At present there is a reliance on the wards to notify the acute liaison of any adult on their ward who has a learning disability whether they need to be supported or not. At present there is variability in the notification process. Contact by the acute liaison nurse will give assurance to patients and their carers that there is someone available who can advocate on their behalf if there are concerns or anxieties. In addition, it will ensure that concerns are addressed while the patient is still in hospital. 10 key messages have been developed and distributed (appendix 2) to support staff within ward / department areas. There are challenges around information sharing, patient consent and identification of a stable data source / register of patients who have a formal diagnosis. There is a requirement for a process whereby; permission is obtained from adults with a learning disability to share information.this remains a priority for 2014/15. Discussions have taken place with Black Country Partnership Foundation Trust service lead and informatics to discuss issues identified in action. A one day a week review of the number of adults with a learning disability is detailed in the table below. Figure 1 represents this in a graph Quarter Week Total 1 April May June July August September October November Page 7

8 Figure Week April May June July August September october November There was a noticeable increase during November in the number of adults with a learning disability. Of this group there was 1 adult where there was a safeguarding investigation in progress, alleged physical abuse at home and a second patient was identified as vulnerable and in need of full social care assessment and support. The learning disability nurse was also supporting an adult to understand her care and treatment by using easy read literature and making daily visits to ensure that she fully understood the information. The hospital chaplaincy volunteers have been supporting 2 of these adults by regular visiting were not receiving any visitors. In addition, the acute liaison nurse has received requests from consultants to support assessment of capacity in relation to planned interventions, diagnostics and surgery. 3.6 Acute Liaison Nurse 24 hours The current post holder has reduced her hours to hours (2.5 days per week). A job share has been advertised and successfully being recruited and they are presently on induction shadowing the current post holder. Communication with commissioners hopes to illustrate the need to provide a 1.2 whole-time equivalent, by two band 6 nurses each working 22.5 hours (3 days per week). This additional investment in the role will ensure that the needs of pwld are being met and there is a reduction in health inequalities. Preferences and choices will be offered, and there will be respect for diverse needs, patient safety will be enhanced. This is a service improvement initiative which will improve the patient experience. The rationale behind this is presented below: An opportunity for both nurses to have one day cross over to oversee and manage workload, develop innovations, introduce initiative s etc. To jointly manage complex and challenging cases To empower and aid peer support To develop out of hours support to patient with learning disabilities accessing acute services e.g. weekend hours if required Page 8

9 Opportunity to produce a strategic plan for the implementation of acute liaison across Walsall and Black Country Partnership Foundation Trust Developing care pathways Maintaining a high profile of the needs of patients with learning disabilities Robust awareness training to acute clinical and non-clinical staff Develop accessible information, which ranges from general service information through to clinical advice related to illness, disease and interventions. The commissioners have provided a costing to allow consideration of this additional resource. 4.0 Integrated Care Transition from children services into adult s services also allows the acute liaison to liaise with and communicate with parents. This has been done by: Stand at Mary Elliot Special School meeting with parents of children in transition, many of whom talked about poor past experiences of acute care and had low expectations of health care. Visits to specialist day services, meeting people with learning disabilities and their carers giving information on accessing acute services and role of the acute liaison nurse. Education given on what to expect when being admitted into hospital. In addition, the acute liaison nurse attends the local Black Country Network meetings that have been set up with other acute liaison nurses (Sandwell, Dudley and Wolverhampton) which offer peer support and cross fertilisation of ideas. 5.0 Engaged and Empowered Workforce In order to ensure that the workforce is engaged and empowered, it is important that staff have a knowledge base in relation to learning disability and their roles and responsibilities in meeting their care needs within their wards / departments. Awareness/education stands to hospital staff, collaboratively with people with learning disabilities, have been held during Whilst learning disability awareness has been part of clinical update since 2008, it has not been incorporated into clinical update for 2013/14 or 2014/15. However, a more focused level of training has been facilitated by the acute liaison nurse who delivers ward based briefing sessions and it is anticipated that by end March 2015 all staff on the adult wards will have attended a ward based session. From April 2015 there will be a plan to hold quarterly learning events for all staff which will be supported by adults with a learning disability. The West Midlands Mental Health Institute LETC have commissioned a new Education Resource about Learning Disabilities and each organisation has been Page 9

10 allocated 10 of these Toolkits that have been produced for distribution to Trusts across the region. This resource entitled Making a Difference Together: A Health Toolkit has been produced by Professor Sue Read at Keele University and will be available for distribution in December. 7.0 Conclusion The work of the acute learning disabilities liaison nurse has been effective in relation to profiling learning disabilities and supporting staff in recognition of their individual needs. The 6 lives action plan has been revisited to provide a focused stream of work for 2014/15. A review of any complaints, or concerns received have been and will continue to be used to improve the care delivery to this cohort of adults. 8.0 References Michael, J (2008) Healthcare for All: Report of the independent inquiry into access to healthcare for people with learning disabilities Death by Indifference, (2007) Mencap. London Death by Indifference: 74 deaths and counting-a progress report 5 years on (2012) Mencap. London Winterbourne View Review: Concordat: A Programme of Action (2012) Department of Health Appendix 1 Page 10

11 Appendix 2 Page 11

12 Ten Messages Campaign Ten Messages Campaign The The top top ten ten must must dos dos for for Patients Patients with with a Learning Learning Disability. Disability. For many people with a Learning Disability going into hospital can be a frightening and confusing experience. They are faced with a new environment, unfamiliar people and often do not understand why they need to be here. Please ensure that reasonable adjustments are made in order to support patients and their carers to receive the highest quality of care possible. Observe the ten must do for patients with a Learning Disability. 1. Refer to the Acute Liaison Nurse for Learning Disabilities at the earliest opportunity Bleep 8336 Ext 6443 Mobile Please ensure you leave a message and contact number. 2. Ask if the patient has a Health Action Plan / Hospital Passport and use it actively. Listen to all of the information given to you by their families and carers; these are the people that know the patient well. 3. Find out how the patient is going to communicate with you as it may be verbal or nonverbal, they may also use a communication aid. Take Time to listen 4. Make reasonable adjustments to reassure the patient and their carers. 5. Offer longer appointment times where ever possible first or last appointments at less busy times 6. Never assume that all symptoms the patient presents with are linked to their Learning Disability. 7. Give patients clear explanations for any procedure or treatment to be carried out. Use Simple sentences using signs, symbols and pictures to aid your explanation wherever possible. Avoid using medical terminology. 8. Continuity and familiarisation is paramount, please allow open visiting and allow carers to stay with the patient wherever possible if they wish to do so. Never presume a relative or carer will stay with the patient continually. 9. Check the Mental capacity Act for information regarding capacity to consent. Never ask carers to sign consent forms. 10. Be confident Page 12 Be falls aware think patient safety

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