Learning Disabilities Launch Report v0.2
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Tackling Indifference ~ December 2009 Healthcare Services for People with Learning Disabilities Launch Report
Transcript of Learning Disabilities Launch Report v0.2
Tackling Indifference ~ December 2009 Healthcare Services for People with Learning Disabilities
Launch Report
Contents
1 About the launch 3
2 “Tackling Indifference” launch programme 4
3 Speaker biographies 6
4 Presentations 18
5 Interactive session 36
6 Newspaper stories about the launch 60
7 Find out more 70
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1 About the launch
NHS Quality Improvement Scotland recently carried out visits across Scotland to check learning disability services against the revised Quality Indicators for Learning Disabilities. We invited people to attend the launch of “Tackling Indifference – Healthcare Services for People with Learning Disabilities”, which is a national overview report about what we found on these visits. The launch was on Thursday 10 December 2009, at Our Dynamic Earth, Edinburgh. This report is about what happened at the launch.
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“Tackling Indifference”
Launch Programme 10th December 2009
2 “Tackling Indifference” launch programme
1030 Registration and Coffee
Main Entrance
11.00 Welcome
Steve Robertson
The Biosphere
11.05 Our experiences of healthcare services
Margaret & Joseph Kelly
The Biosphere
11.15 Why we did the review
Jan Warner
The Biosphere
11.20 What we found out
Keith Bowden
The Biosphere
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11.35 What do we do now?
Interactive session
The Biosphere
12.00
NES response to NHS QIS report: meeting the health care needs of people with a learning disability in Scotland
This will include any questions and answers about the presentation
Tommy
Stevenson
The Biosphere
12.20
The liaison nursing services across south east Scotland research study
This will include any questions and answers about the presentation
Michael Brown
and Juliet MacArthur
The Biosphere
12.40 A view by Isobel Allan, mother and carer
Isobel Allan MBE
The Biosphere
12.50 Question and answer session
Closing comments and Thanks Keith Bowden
The Biosphere
1.00
Lunch
Opportunity to view poster displays and stands
The Ozone
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3 Speaker biographies
Isobel Allan MBE Family Carer
Isobel is the founder, past Chairperson and present honorary President of the Rett Syndrome Association Scotland. She is the mother to Susan, a 29 year old lady who has Rett Syndrome. Susan, who lives at home with her family, has multiple and complex health needs, profound learning disabilities and challenging behaviour. Isobel is the Vice Chairperson of Carers Scotland and was the Carer representative on the Scottish Executive’s Carers Legislation and Working Group (2000). She is a trustee of Sense Scotland and Community Carers Cambuslang and Rutherglen. She was a Local Advisory Council Member (NHS Greater Glasgow and Clyde) with the Scottish Health Council, a Reviewer with NHS Quality Improvement Scotland and an Inspector (Carer) with the Social Work Inspection Agency (SWIA) and serves on Joint Improvement Team a partnership between Scottish Executive, NHSScotland and COSLA. She has served on numerous committees at local and central government level on carer and user issues including being a steering group member on Scottish Executive: The Future of Unpaid Care in Scotland, Care 21 (2006) and Scottish Executive: Review of NHS Wheelchair and Seating Services in Scotland (2006)
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As a person-centred counsellor and trainer she has devised, produced and presented training workshops and courses for professionals and Carers on a number of issues including Carer issues, bereavement and loss, counselling, counselling skills and various interpersonal skills. Isobel was awarded the MBE for services to Carers in Scotland in June 2005.
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Dr. Keith Bowden Consultant Clinical Psychologist,
NHS Forth Valley
Clinical Advisor, NHS QIS
Dr Keith Bowden is a Consultant Clinical Psychologist and Head of NHS Forth Valley Learning Disability Psychology Department. For the past 18 months he has been seconded to NHS Quality Improvement Scotland for one day per week as Clinical Advisor - Learning Disabilities for the peer review programme of visits on Healthcare Services for People with Learning Disabilities in Scotland. Keith has been a clinical psychologist in learning disabilities services in the NHS for almost 25 years, working in South Glamorgan, Fife, Glasgow and Forth Valley. He has particular interests in severe challenging behaviour, criminal justice issues, consent to treatment and clinical governance.
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Dr Michael Brown PhD, MSc, BSc (Hons),
PG Cert. HE, Dip. CMHC, Dip. Prof. Stds,
Cert. CPT, RNLD, RGN
Nurse Consultant, NHS Lothian & Lecturer,
Napier University, Edinburgh
Michael’s clinical focus is on improving general hospital care for people with learning disabilities and was involved with inquiry reviews following the death of people with learning disabilities in Scotland. He is a member of the NHS Quality Improvement Scotland national working group focusing on improving general health service care. He has published in the nursing literature on the issue of general hospital care for people with learning disabilities and is a member of a research team in Edinburgh researching the liaison nursing services across Scotland to identify improved patient outcomes. He undertook a PhD at Edinburgh Napier University looking at how nurses can improve the health and wellbeing of people with learning disabilities in Scotland. He has worked in specialist learning disability health services in Lothian and as a project nurse for the Scottish Government on Promoting Health, Supporting Inclusion – the review of the contribution of all nurses and midwives to the care support of people with learning disabilities. He was project manager for NHS Health Scotland on the learning disability health needs assessment report, People with learning disabilities in Scotland and is now Consultant Nurse with NHS Lothian and Lecturer, Edinburgh Napier University, in October 2003.
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Margaret Kelly Key Housing
Margaret was brought up in Shortroods, Paisley with her mum and dad. When they passed away Margaret lived with her brother and his wife until 1992 when she moved to her own flat at Key Housing in Renfrew. Margaret has always kept herself busy, and has made many friends over the years. Margaret attended a day centre ran by Capability in Hillington for many years, and has completed and enjoyed a few college courses. Due to her good work, volunteering for many years in an elderly care home, Margaret received an award from the Lord Provost of Paisley. In the 90’s Margaret became involved with the Tenant Advisory Group at Key Housing. Margaret has always been interested in tenant concerns, and enjoys getting to know people. Her work here included helping tenants be aware of their rights and responsibilities and helping to interview new staff. Again Margaret took part in training for these tasks. This group really helped Margaret build her confidence as she soon realised she had skills which could be used within this group. Through Key Housing, Margaret has given talks about bullying to schoolchildren and has also given talks to health professionals. Margaret also works as a co-trainer inducting new staff to Key Housing.
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Earlier this year Margaret was given a lifetime achievement award for the work she has done for Key Housing. Margaret met Joe whilst she was working with a group called Common Knowledge and they found that they had a lot in common. The last 6 years have been very positive for Margaret, she got married to Joe and they moved to a house in the community. They both have travelled widely with Margaret realising a lifetime ambition when she and Joe had a holiday to Graceland to see the home of her idol Elvis. What next……watch this space!
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Joseph Kelly
Key Housing
Joe was born in Dennistoun, Glasgow and moved around quite a bit as a child. Joe lived with his Mother until he was 18 when he moved to a flat in the Cowcaddens. When Joe left school as there were no jobs he went on to complete a cookery course and worked with chefs in canteens and restaurants. Joe later worked with meals on wheels. Soon after this Joe gave up work to care for his mum. Joe moved back in with his mum when she became ill, after this he moved to a flat in Sighthill. This unfortunately did not turn out well for Joe; in fact he was attacked when he lived here. Joe moved to Parkhead where he settled in to his own large flat and got support from Key Housing. In the late 90’s Joe became involved with Key Housing’s Tenant Advisory Group, Common Knowledge and various other working groups helping to promote the interests and needs of people with a disability. Joe has recently enjoyed being involved with NHS QIS projects, and has always been keen to give his view on health matters. Joe has many talents and enjoys both drawing, painting and writing. In fact he has sold a painting and has had some poetry published.
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When Joe met Margaret they married and made a new start together in a flat in Renfrew. They share many interests and are never happier when working together to promote a better understanding of people with learning disabilities.
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Juliet MacArthur MSc, BSc, PG Cert, RNT, RN
Lead Practitioner Research, NHS Lothian
Juliet is a registered nurse who has worked in general hospitals in Edinburgh for 23 years. After working in specialities such as haematology, cardiology and surgery she moved into a practice development role where she met Michael Brown 12 years ago. They worked together for a number of years to develop ways to improve the care of people with a learning disability in hospital and established the first Learning Disability Liaison Nursing post at the Western General Hospital. Since then she has undertaken two research studies and contributed to a number of national initiatives in this area. For two years she was a part time lecturer on the learning disability undergraduate nursing programme at Edinburgh Napier University and was the module leader for the Adults with Incapacity Act. Her current role in NHS Lothian is to develop and implement a framework to support nurses, midwives and allied health professionals to undertake their own research. She is undertaking a part-time PhD examining the impact of the Leadership in Compassionate Care Project.
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Steve Robertson Vice Chair, People First (Scotland)
Steve is currently vice chair of People First (Scotland) and has been on the board of directors for the past 14 years. He represents People First (Scotland) on the national Same As You? Implementation group and has sat on various working groups looking at local area co-ordination and day services. Steve sits on the multi-agency inspection steering group with the Social Work Inspection Agency (SWIA) and has been a member of the inspection team on learning disability joint inspection visits. He is also a member of the Independent Living in Scotland Steering Group and the Core Reference Group. Steve was a reviewer for the NHS Quality Improvement Scotland review for Healthcare Services for People with Learning Disabilities that took place in 2008–2009.
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Tommy Stevenson Educational Project Manager
NHS Education Scotland
I’ve recently started as the Educational Project Manager, Learning Disability with NHS Education Scotland. Prior to this I was the Senior Nurse for Learning Disability in NHS Ayrshire & Arran. My main areas of interest are integration, complex needs and practice development. My current post is for two years and provides an opportunity to review workforce needs in the context of changing models of care and new demands being placed on practitioners and direct care providers. The post also allows an opportunity to ensure the needs of service users, carers and families influence the preparation of service providers from different agencies in the delivery of health supports.
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Jan Warner Director of Patient Safety & Performance
Assessment
Jan Warner has worked in NHSScotland for over twenty years. At the beginning of her career she worked mainly on cancer-related projects and she was the first national co-ordinator of the Scottish Breast and Cervical Screening Programmes while they were introduced in Scotland. She joined the Clinical Standards Board for Scotland in 2000 and went on to become Director of Patient Safety and Performance Assessment in NHS Quality Improvement Scotland when it was set up in 2003. Jan is responsible for reviews of many different health services including cancer, diabetes, healthcare associated infection coronary heart disease and schizophrenia. She has been involved in the learning disability project since it started in 2005 and has learned a lot about these services, those who work in them and those who use them. Jan teaches on the Public Health masters course at Edinburgh University and also runs a number of multi-agency programmes involving education and social work. The current project is joint inspection of services for people with learning disability and this is being done with the Social Work Inspectorate. When she isn’t at work Jan spends a lot of her time at her allotment. She also volunteers at a local youth club for children and young people with physical disability.
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4 Presentations
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The big picture
Qualit
y In
dic
ato
r S
tate
ments
NHS Boards
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5 Interactive session
We asked the people who came to the launch their ideas about how they think we can make the recommendations happen.
We asked them to write their ideas on post it notes for each recommendation. We have written all their ideas below and put them in themes.
Recommendation 1 says “The NHS should make sure Part 5 of the Adults with Incapacity (Scotland) Act 2000 (AWIA) is always used when it should be”.
Ideas about how we can make this happen:
Theme of leadership
• The development of clear leadership (for the long term)
• NHS boards should appoint a senior person, with experience of working in learning disability services as a champion
• Ensure that responsibility for AWIA and in particular Part 5 is located within an appropriate department in Scottish Government
• The Donnet Action Plan should be reviewed locally at least annually by a named lead in the board clinical executive team (and the ownership and accountability rests with them)
• Each board should have a named lead in Clinical Governance whose job it is to ensure the formal review of implementation of AWIA happens
• Not convinced that the review should be solely directed at boards. Part 5 is the responsibility of part of Scottish Government who would need to be involved at the start
• Lead role from board level down to drive adherence to Act.
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Theme of training/awareness raising
• Training for all staff not only on ‘Act’ but on ‘people skills’ regarding engagement
• Ensure all parties (staff/service users/carers) are all familiar at least with the essence of Adults with Incapacity Act Part 5
• Develop guidance material on required training at 3 levels: 1) induction for all staff; 2) those people in clinical practice caring for people who may lack capacity; 3) those who will be involved in assessment capacity
• Make training mandatory. Staff at all levels need to be trained/receive education in respect of communicating with persons with a learning disability
• Introduce training for other professionals e.g. nurses to complete Part 5
• Social Work need to roll out their staff training to whole of Community Care – train NHS staff, train NHS in community, train advocates and volunteer supporters into NHS Services
• Training in quality interaction with people who cannot communicate
• Devise ways of engaging with patients who have learning disabilities (e.g. easy read cards to inform)
• Ensure patient and carer is aware prior to ‘signing’ on behalf on someone else
• Dentists and Incapacity Certificates: 1) training not accessible; 2) training too long; 3) guidance needed on resolving conflicts about treatment plans when ‘others’ consulted (not patient) disagree with options of best interest/benefit to patient; 4) many carers still not aware of Incapacity Act/can’t afford to be guardians
• Ensure training is provided for all staff in relation to the Act – both pre-registration and in-house training (part of PDP). May require initial needs assessment
• Needs to be higher profile
• Training should be part of all induction training
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• Training should include people with learning difficulties as trainers
• Getting training on AWIA out to everyone in health services including GPs (e.g. GP DVD in Dumfries & Galloway)
• Compulsory training for all healthcare staff
• Need more focus on investment in training and education
• Knowledge and awareness of AWIA
• Support training – training champions
• Maybe need annual training
• Training on recognising and responding to communication support needs
• Scottish Government and BMA to issue clear guidance and instruction to doctors
• Introduce standard training packages for all NHS staff about consent and capacity
• Understand the spirit of the Act and work within principles. Understand correct application of Act and not merely regard as a paper exercise
• More connected messages of AWIA, mental health and venerable adults
• Ensure clinicians are fully aware of AWIA and their responsibilities in relation to this
• Staff require education in relation to Part 5 of AWIA
• Has there been enough training for staff? Every nurse in Scotland should have training
• Awareness and training made compulsory
• Create different levels of training that is accessible to all
• More people trained in assessing capacity. Recognised university course
• Link adult support and protection training with AWIA. Make it a HEAT target
• Training for senior medical staff in hospitals should be provided by other senior medical staff well practiced in the use of AWIA, e.g. intensive care consultants, consultant
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surgeons (most commonly trauma orthopaedics). In parallel, senior nursing staff should be trained by other senior nursing staff ideally from same hospital
• Medical admission units (especially charge nurses and senior medical staff) need to be made aware that Section 47 forms should be considered as part of the admission process for people with learning disabilities and other incapacitated
• Share positive examples of application
• Provide training for GPs as part of ‘protected learning time’. Open up training to other professional staff, e.g. podiatrists, dentists, nurses to allow them to do own certificate
• Need to review (nationally?) advice/training associated with AWIA. Initial training some time ago and need to audit application/implementation and recommend improvements – Audit Scotland?
• Training for Ambulance Service
• In addition to NES, working with boards on an educational response and the learning network. There should be a total change in nursing and medical and therapy training to include mandatory input in theory and practice when caring for people in general settings
• In line with the Act, communication support needs to be readily available in order to maximise a service user’s capacity to engage in the decision-making process around their care. Staff need to be trained in how to use such support
• Medical Staff training
• Better communication between services so clear messages regarding AWIA
• National e-learning package developed
• Compulsory education for medical staff who take consent to treatment
• Improving awareness of the AWIA to medical professional , police, health and social care staff
• GP training schemed to include learning on how to ‘access capacity’
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• NES – the Central Belt response. How helpful for other boards in Scotland?
• Training for doctors (including GPs) and AHPs pre-registered training
• AWIA legislation as part of all healthcare professionals pre-registration curriculums
• Robust training programme for years 1 and 2 around the Act. Also for consultants
Theme of accessible information for people with learning
disabilities and their carers
• Each board needs to ensure information is provided in a variety of formats in order to meet individual need
• Ensure all parties (staff/service users/carers) are all familiar at least with the essence of Adults with Incapacity Act Part 5
• Devise ways of engaging with patients who have learning disabilities (e.g. easy read cards to inform)
• GPs should have to be responsible for making sure that parents of people without incapacity are informed about the Act – and make sure there is welfare guardianship put in place and give advice
• Support for people with learning difficulties to know about the Act
• NHS should write to all parents and carers in simple terms when their child is approaching 15/16 years old to make them aware of Part 5 of AWIA
• Making sure client has appropriate written/verbal information to be able to give informed consent
• Need a simple interpretation of what this means for staff and patients – sounds very ‘clinical’
• Training for people with learning disabilities – they may not know Act and long-term consequences of choices
• In Highland Learning Disabilities Relationship Group with NHS Highland have produced a ‘help’ DVD pack around putting the legal speak of the Act into drama, Makaton and board maker. Drummond School are going to write their own with
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pupils. We will be getting learning disability groups and people with learning disabilities to roll it out to other people with learning disabilities
Theme of monitoring/evaluation
• Introduce some form of local monitoring of the implementation of Part 5
• Re: monitoring of the boards actions re AWIA and Donnet Action Plans for Scottish Government – annual reviews by health ministers and local delivery plans should include this, linked to Equally Well. Maybe should be a defined HEAT target and compulsory SESP
• Regular reviews of who has been trained
• Understanding of AWIA should be part of appraisal for doctors and nurses
• Boards should make annual returns on who has been trained
• Monitoring systems to know who has been training
• Audit GP practices re existing knowledge and practice
• Emphasising accountability for practitioners. Opportunity to ‘whistle blow’
• A system to ensure effective monitoring should be in place and regularly audited. This topic should feature at least once per year on the agenda for each health board clinical governance committee
• NHS boards require support on how to develop central monitoring of Part 5 AWIA, i.e. compliance can happen with GP and not hospital
• Require each health board to undertake an audit of implementation of AWIA legislation – using a nationally agreed tool.
• Single electronic systems that works – record AWIA certificates
• Ask boards about progress in their reviews. Annual reviews with the Minister and in the self-assessments
• Link adult support and protection training with AWIA. Make it a HEAT target
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• Boards should do an internal audit of compliance with AWIA
• Audit Scotland should do a review of the implementation of AWIA
• Need to review (nationally?) advice/training associated with AWIA. Initial training some time ago and need to audit application/implementation and recommend improvements – Audit Scotland?
• The Donnet Action Plan should be reviewed locally at least annually by a named lead in the board clinical executive team (and the ownership and accountability rests with them)
• Agree about the need for a review. Would like to be sure that the emphasis will be on enabling people to be all they can be – and not about restricting people needlessly
• Each board should have a named lead in Clinical Governance whose job it is to ensure the formal review of implementation of AWIA happens
• All boards be asked to report annually on their progress on implementation as part of annual review meeting with cabinet secretary – thereby holding boards to account
• Additional box to tick on generic consent form to pay attention to this part of the AWIA can be audited re compliance.
Theme of documentation/processes
• Include Part 5 in anticipation care documentation
• Boards need to ensure Consent to Treatment Policy is in place and fully implemented in their areas
• The AWIA Part 5 is about plans of care not just Section 47s. This needs to be emphasised
• Admission documentation could reflect legislation requirements
• Medical admission units (especially charge nurses and senior medical staff) need to be made aware that Section 47 forms should be considered as part of the admission process for people with learning disabilities and other incapacitated
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• Clear pathways need to be developed to ensure that, where required, proper assessment is carried out as to a person’s capacity to consent, rather than judgements being made unilaterally by people who have limited/no experience of people with learning disabilities
• Additional box to tick on generic consent form to pay attention to this part of the AWIA can be audited re compliance
• Clear guidance on the process for Part 5 Section 47 certificates to be shared and stored.
Theme of GP contract arrangements
• Write into GP contracts that GPS must comply with the AWIA
• GPs will not do it unless paid to do so
• GPs appear to know but don’t allow resources/time for completion. Do you need to pay GPs for this task?!?!
• Clarify and realignment of payments
• Part of general medical services contract.
Theme of enhancing communication
• Training on recognising and responding to communication support needs
• Establish screen for Part 5 practitioners which reliably identifies communication support
• In line with the Act, communication support needs to be readily available in order to maximise a service user’s capacity to engage in the decision-making process around their care. Staff need to be trained in how to use such support
• Extra time given to clients with learning disabilities so procedures can be explained
• Better communication between services so clear messages regarding AWIA
• Strengthen remit and quantity of learning disability liaison staff (nurses and medics) to highlight good practice
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• Increased provision of communication support assessment and management services i.e. speech and language therapists
• See analysis of weaknesses and recommendations, Royal College of Speech and Language Therapists (2002)
• Commonly understood and recognised ‘best person/practitioner roles in MDT, e.g. speech and language therapists expertise in assessing and making recommendations re communication.
Other ideas
• A specific health screening programme for people with learning disabilities is very good in principle. However, people still have a choice whether or not to accept/use this source
• Ensure that responsibility for healthcare for people with learning disabilities is an understood component of healthcare directorate in Scottish Government – this also relates to 2 and 3
• Emphasising accountability for practitioners. Opportunity to ‘whistle blow’
• The application of AWIA should be circulated
• Knowledge is there but lack of application (apathy)
• Extra time given to clients with learning disabilities so procedures can be explained
• Website to list contacts and short CV of all services available – NHS and voluntary
• Not convinced that the review should be solely directed at boards. Part 5 is the responsibility of part of Scottish Government who would need to be involved at the start
• More widespread use of appropriate adult schemes within hospitals
• Adoption of the Police’s ‘Appropriate Adult’ for consent as a minimum requirement
• Strengthen remit and quantity of learning disability liaison staff (nurses and medics) to highlight good practice.
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Recommendation 2 says “Good arrangements should be put in place to make sure that adults and children with learning disabilities can use health services. This is written in the Disability Equality Duty”.
Ideas about how we can make this happen:
Theme of involvement of people with learning disabilities and
carers
• Actively seek input from patient/carer/staff
• Those who don’t have carers or supporters to help to know – catch them before leave school. Use school nurses more, involve them more
• Wider inclusion – service users, carers at planning stage
• Check out what you think is needed is what is really needed, i.e. ask expert/patient/carer
• People with learning disabilities – joint work with them to drive changes
• Equality training for staff by people with learning difficulty
• Involvement of service users – they know what needs to be changed
• Membership of NHS board DED groups to include people with a learning disability and family carer reps.
Theme of improving accessibility of information/increasing
awareness of people with learning disabilities and carers
• People might need support to understand the information. Support should be available – whatever is needed by the person
• Tailored – meaningful resources
• Need to help young people actually get practice in using and entering and booking services themselves – not just being told in a group or once 19 years old if lucky to have an enabler
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• Health services need to assess issues of accessibility for people with communication impairment to ensure that people with learning disabilities and communication difficulties can benefit from health promotion initiatives and actively engage in their health and its treatment
• Develop good accessible information for people with learning disabilities about their health needs and health problems
• Access to facilities to be improved, e.g. appointment letters should be more accessible
• All NHS communication should be in pictorial/easy read
• Information booklets are a good idea but must be done well – good quality
• Adequate investment in communication support services/resource structure etc national, regional and locally – see CFS proposal to Independent Living Initiatives
• Explain – information matters
• “Preparation” appointments. Information given at appropriate level
• Use of symbols
• Accessible information.
Theme of improving accessibility of practice
• Where past fear of a service has put people off – do trial runs to learn about
• Longer appointments with doctors. System whereby patients can check in at Doctor’s surgery or hospital appointment and then be able to move about freely if necessary before being called – reducing stress for all concerned
• Hospital passports so people understand information being shared and agree with it and understand why shared
• Share – celebrate what has worked and make sure to share it
• Small things can make a difference – flexible appointments, single rooms, and attitudes. Taking the time to listen to people
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• Information can be lost when move between ward units. Need A4 sheet of vital information and also don’t move so much
• Dedicated time for LD sessions? Mandatory training for frontline general staff
• “Preparation” appointments. Information given at appropriate level
• More lengthy time slots to explain procedures/processes.
Theme of improving accessibility of facilities
• Equipment and environment
• Ensuring investment in facilities, e.g. changing places
• Access to facilities to be improved, e.g. appointment letters should be more accessible
• Every NHS board should have specialist equipment, including ambulances for people who have difficulties with weight (overweight)
• Accessible changing places, toilets – as per PAMIS Changing Places Campaign.
Theme of staffing arrangements
• Need more liaison nurses
• More local area co-ordinators working in health boards
• Increase workforce size and skill mix and establish minimum size and skill mix/population
• The expansion and/or new development of learning disability nursing services will be key to ensuring equal access/treatment – “credible ambassadors” who can advocate on their patients’ behalf in healthcare settings
• Each board should identify a senior person as a champion to raise the profile of access to services
• More liaison nurses but also ensuring that mainstreaming.
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Theme of Equality Impact Assessments & Disability Equality Duty
• All NHS boards need to update their Donnet Action Plans to ensure they comply with the DED
• Flag up Disability Equality Duty on IT systems
• Equality Impact Assessments must include learning disability not just disability
• The Scottish Government equality team should insist that boards and councils have a dedicated section on learning disabilities within their EQIAs, i.e. not optional
• EQIA should reflect what the boards are doing
• Re-emphasis of spirit of DDA – that it is about more than physical access to building etc
• Ensure that learning disability is referred to in all high level strategic document – which should be equality impact assessment
• It is about everyone’s duty to comply with the DDA – to be flexible, and change areas of practice. It is not just down to guidelines
• Monitor impact assessments to ensure they are taking into account the views of people with learning disabilities
• Ensure not only DED is known but DES is in place.…at every level…in every department… for all staff.
Theme of training/awareness of staff
• Those who don’t have carers or supporters to help to know – catch them before leave school. Use school nurses more, involve them more
• Need to roll out to GPs, school nurses, all in health and community care as there are gaps – it’s everybody’s business
• Encourage NES to develop learning materials and case studies that illustrate positive examples of reasonable adjustments so that good practise can be shared
• Staff training in learning disabilities at all levels, administration, reception, clinical. LD centred information
• Training for primary care staff regarding needs of learning disability population
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• Better training for nurses and doctors
• Mandatory training for all staff administration/clerical/support services who come in contact with people accessing healthcare/services
• Raise awareness of needs of people with a learning disability within services
• Link into professional accountability registration and regulation. Appraisal and staff development
• Total communication – training for frontline staff
• More training and audit of DED
• All healthcare staff should undertake part of their training in learning disability services – both health and social care
• Establishing a national learning network. This needs to be a combination of styles i.e. internet, online learning (NHS board’s mandate), events/master classes. There should be a web based repository for people to load on tools and files/documents people have produced locally – to allow others to “steal” and replicate. This should be on “communities of practice” on the local government improvement service space – as about to do this well
• Training for staff on DED and what learning disabilities are and how they can adapt services appropriately
• Education and awareness of Disability Equality Duty
• It is about everyone’s duty to comply with the DDA – to be flexible, and change areas of practice. It is not just down to guidelines
• Dedicated time for LD sessions? Mandatory training for frontline general staff
• Increased training and awareness of learning disability for all staff
• Medical training should ensure that all students are enabled to gain experience in the diagnosis and treatment of illness in people with learning disabilities
• Education pre/post qualifying CPD.
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Theme of monitoring and evaluation
• Boards should implement, or reconsider their implementation, of the Best Practice Statement. Ensure this is considered across all areas and not just in pockets – Best Practice Statement groups to report via clinical governance
• Clinical audit of Disability Equality Schemes - promote “reasonable adjustments”
• More robust monitoring process to make it happen
• All boards should be required to report on a regular basis back to government on what they have done around the DED
• Boards require to develop systems to facilitate a person with a learning disability being able to raise issues easily in relation to their experience of accessing services
• Monitor impact assessments to ensure they are taking into account the views of people with learning disabilities
• An individual responsible in each hospital for auditing DDA and ensuring good practice.
Theme of NHS QIS Best Practice Statement
• Boards should implement, or reconsider their implementation, of the Best Practice Statement. Ensure this is considered across all areas and not just in pockets – Best Practice Statement groups to report via clinical governance
• The Best Practice Statement self assessment audit tool should have to be done by all GMPs as part of their GMS contract annually and also should be done annually by each acute area, e.g. ward – OPD.
Theme of reasonable adjustments
• Reasonable adjustment needs to be defined clearly. Look at what is working well
• Explain/define/give examples of what a reasonable adjustment is
• What do we mean by reasonable adjustments. How can some GPs do this and others not.
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Other ideas
• Bypass consultants’ “waiting lists” and unofficial criteria to get on
• Maybe “special” posts should not be so “special” – let us in
• Engage with people more effectively
• No mention of role of SCLD. Recognise that the task is predominantly health responsibility but needs to be seen as part of a “having a life” package, SCLD have done work already
• Referral system needs to identify people who will need extra support so that arrangements can be made
• Care packages should be in place for most common conditions experienced by people with learning disabilities from point of access to discharge and audited regularly
• Address discrimination (with some senior doctors)
• Link into professional accountability registration and regulation. Appraisal and staff development
• To ensure that the healthcare needs of children are managed allowing transition between child/paediatric services and adult services. Need for clear pathways and transparency for families to ensure they are supported during ones stressful period
• Project search – education and employment opportunities provided in hospital
• NHS boards should facilitate “read across” from other services. Learning disability services/dementia services/palliative care services all have skills and approaches to care which will benefit all
• Need to ensure service co-ordination is there for people with PMLD. Joint work
• Information can be lost when move between ward units. Need A4 sheet of vital information and also don’t move so much
• What has been done within the NHS 24 to manage calls from people with learning disabilities
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• Concerned that the recommendation wording is rather vague to ensure that “poor” patient experience (often related to culture) is eliminated
• Boards require to develop systems to facilitate a person with a learning disability being able to raise issues easily in relation to their experience of accessing services
• We need to clearly understand what problems are before we can tackle it
• Each board should identify a senior person as a champion to raise the profile of access to services
• A lot is the same as for recommendation 1
• Value of range of approaches like community development to support and provide services.
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Recommendation 3 says “NHSScotland should make sure that primary care services are able to meet the needs of children and adults with learning disabilities by developing the good things that have happened because of the Scottish Enhanced Services Programme for Primary and Community Care”.
Ideas about how we can make this happen:
Theme of improving communication
• Difficulty in getting people to read patient’s individual needs before an appointment. Communication passports, acute care wishes, easy read DVDs. Make sure a person has a question card before an appointment instead of fear during the appointment as patients are not recognised as needing a carer
• All GPs to offer easy read materials to patients
• Establish quality national communications access standard. Including basic communication access competence, resources etc
• The Scottish Government should provide easy read health information leaflets so that individual NHS boards are not duplicating effort
• The need for more links between primary, acute and learning disability services
• Do healthcare workers, let alone patients know what is currently available regarding services, initiatives and requirements? I don’t
• More primary care liaison nurses, develop joint clinics, share best practice, link between primary and community care, be the catalyst for changes
• Closer co-operation between GPs and community learning disability teams
• Communications training and resources to effective levels. Stop cuts.
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Theme of good practice
• Longer GP appointments – don’t feel rushed – feel listened to
• Good practice which been developed is now not a priority within primary care practices
• Misleading to suggest some of this work hasn’t already begun. Learning Network is one example of this
• Advertise examples of good practice. Let other people know about the successes
• Doctors could actively phone to make appointments for people with learning disabilities to come in and have their screening. Perhaps tied in with some kind of monetary reward. Same applies to dentists
• All people with learning disabilities should have an anticipatory care plan
• More primary care liaison nurses, develop joint clinics, share best practice, link between primary and community care, be the catalyst for changes
• Development of database – electronic database tools. GP practices (health check tool – health assessments). Acute care/sharing good practice. Stats.
Theme of training
• Ensure and encourage GPs have access to learning materials provided by the Royal College of General Practitioners
• All GPs and NHS staff should receive mandatory training
• Up skilling GPs to give them the tools to continue good practice
• Communications training and resources to effective levels. Stop cuts.
Theme of registers/databases
• Having a register of people with learning disabilities in each area, so that GPs know their target population
• Everyone with learning disabilities should be asked if they want to be included in the learning disabilities register
• Improve access to information through electronic systems
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• Learning Disabilities register to flag for 10 minute appointments and if communication support is required
• National database – to then gather statistics from. Can look at services and access at a national level
• Include reliable communication competency indicator in learning disabilities database
• Share database with acute care to flag people in screening. Likewise acute services send back data of attendance to primary care services
• Development of database – electronic database tools. GP practices (health check tool – health assessments). Acute care/sharing good practice. Stats
• NHS boards to ensure IT systems have the ability to record details of all individuals with learning disabilities and share between services – primary/secondary care.
Theme of optional basis of current arrangements
• Making the Scottish Enhanced Services Programme (SESP) compulsory
• The SESP is not mandatory, so how can the recommendation happen?
• Recommendation – HEAT target
• What about the areas (i.e. NHS Fife) who have opted out of the SESP for learning disabilities
• Make the SESP attractive to General Practice to opt-in or make it compulsory
• Make the learning disabilities register and health checks part of the QOF, so that they are compulsory
• Learning Disabilities SESP should be non-optional. Should be core GMS
• There should be no opt-out of the SESP. All GPs in some NHS board areas have pulled out of the programme
• Make guidance (statutes) less permissive, more directive
• Make inclusion of learning disabilities SESP mandatory for NHS health boards to fund support
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• Mandatory requirement for NHS health boards to choose learning disabilities DES
• Clear message on the need for health screening for people with learning disabilities – mandatory for GPs to offer
• Robust guidelines for minimum standards within the SESP.
Theme of attitude change
• Changing systems, changing values and attitudes. Partnership working
• What happens if person freezes when they try to speak to GPs. Some GPs rush when a patient is in pain
• Important that GPs speak so people can understand and be prepared to write it down. ‘Not my job’
• Recognition by GPs that meeting particular health needs of people with learning disabilities is part of a role – right for people with learning disabilities. Should not have to be paid extra to do this.
Theme of health screening arrangements
• Resource health screening programme. Use men’s health and women’s health clinics
• There needs to be a system in place in all NHS health boards to ensure that the health screening that is part of the SESP is picked up even if GP practices do not opt to deliver it
• Doctors could actively phone to make appointments for people with learning disabilities to come in and have their screening. Perhaps tied in with some kind of monetary reward. Same applies to dentists
• All people with learning disabilities should pro-actively be followed up for general health screening
• The working group that did the health checks (3 year MOT model) finished 1 year ago and the final product still has not been released (by Prof. S.A. Cooper) despite Scottish Government requests. SG should insist it is released and should be put out to GP practices with a covering pack about how to use it
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• The recommendations of the health needs assessment should be fully implemented and the finding used to inform health screening
• Primary and secondary services share outcomes of health screening
• Share database with acute care to flag people in screening. Likewise acute services send back data of attendance to primary care services
• Learning Disabilities nurses should be tracking the screenings of all clients on their database. There should always be a learning disabilities nurse on duty in hospitals
• Clear message on the need for health screening for people with learning disabilities – mandatory for GPs to offer
• Health screening must be included in DES.
Theme of involving people with learning disabilities and carers
• Ongoing involvement of people with learning disabilities in all aspects of workforce development
• Involve service users, carers at every level
• Patient experience.
Theme of monitoring and evaluation
• Need to promote SESP to staff first. Need to have better exit and continuance strategies to service start up so not just stopped and are dumped without tying into other services, to stop the lottery. Also NHS needs to evaluate individual work and projects instead of paying out £s to others to tick the box for NHS and not knowing if they are poor projects
• Prove that the SESP delivers better outcomes for people with learning disabilities
• Development of database – electronic database tools. GP practices (health check tool – health assessments). Acute care/sharing good practice. Stats.
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Theme of funding
• SESP money should be ring fenced and recurring
• This recommendation is too late – funding has been allocated to NHS boards to decide what they want to do with it. Not ring fenced to SESP programme
• Ensuring the SESP is funded and developed is a priority – without this, it will cease
• Doctors could actively phone to make appointments for people with learning disabilities to come in and have their screening. Perhaps tied in with some kind of monetary reward. Same applies to dentists
• SESP should be aligned to the GMS contracts.
Theme of children
• Including children in GP registers should be negotiated across the 4 UK countries i.e. via the QOF
• NHS health boards need to recognise the need for specialist nurses for children with learning disabilities in the community
• Extend children on the SESP registers
• Extend SESP for primary care to include children with learning disabilities.
Other ideas
• Need to look beyond GPs when relating this to primary care services
• Documents are too aspirational and do not include implementation and entry routes, leaving staff, carers and patients wondering if they are allowed in e.g. autism, learning disabilities autism, mental health autism and long term conditions autism – where do you go?
• Huge role for CHP committees and community planning partnerships to embed issues in local outcome agreements
• Scoping of areas not currently involved
• SESP money should support primary care staff (not just GPs) to improve services e.g. Practice nurses
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• Check out with source (i.e. patient carer) what they wish to see
• Remember to put into the overall contract, what is unavailable to patients with learning disabilities. May not be available to anyone else as well. Not always fighting for something you are being denied?
• Make provision of liaison nurse service for primary care, a target for NHS health boards
• Allied healthcare professionals provision in community to ensure that people with learning disabilities fall within the18 week referral to treatment for AHPs and quality strategy indicators.
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6 Newspaper stories about the launch
Courier & Advertiser Published: 11th December 2009
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Herald Scotland Published : 11 December 2009
Vulnerable patients died after failings
in healthcare
Family carer Isobel Allan MBE and Steve Robertson say hospital system excludes some patients. Picture: Gordon Terris
Brian Donnelly
A damning report has found
hospitals and health centres
are failing to provide
adequate healthcare for
people with learning
disabilities, and cites two
cases where patients have
died unnecessarily.
The report was written after a review of general healthcare services in Scotland during 2008 and 2009, and also in response to recommendations made in two Fatal Accident Inquiries, and raises questions about doctors and nurses making
decisions for vulnerable adults.
Roddy Donnet, 50, of Dundee, who had Down’s syndrome, died in May 2003 from bronchopneumonia after suffering a severe untreated outbreak of ulcerative colitis, a painful bowel disease.
James Mauchland, 56, of Perth, died from broncho-pneumonia, malnutrition and spinal and neck injury resulting from a fall in hospital in January 2000.
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Today’s report, Tackling Indifference by NHS Quality Improvement Scotland, also says people with learning difficulties may be suffering in a world of silence and darkness because health professionals are unable to understand their pleas for help.
There are more than 120,000 people with learning disabilities in Scotland, and many of those who also have health problems such as visual impairment find it difficult to access some services.
The Scottish Government’s health standards agency says more must be done by NHS boards to provide help at all levels, from basic care like hearing and eye tests to emergency, out-of-hours call-outs.
The Herald revealed in July that the Royal National Institute for Blind People had found some elderly people with learning disabilities had been unable to see and their carers had no idea when they had lost their sight.
Today’s report says health boards need to become better at understanding the needs of people with learning disabilities and
make it easier for them to access general health services.
The report says it should be easier to have planned visits to hospitals and health centres and it is important that people with learning disabilities can get general health screening, hearing and sight tests and out-of-hours services.
Immediate changes could be made by giving people more accessible information and improving signage, it found.
The report makes three key recommendations:
• NHS boards must make sure they comply with the law on how medical and other healthcare staff make decisions about treatment on behalf of someone who cannot decide for themselves.
• While some extra help is being given, more needs to be done, such as allowing double appointments for better communication.
• NHS boards must take steps to improve the way they identify the particular health needs of people with learning disabilities if
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they are to fully meet these.
Dr Keith Bowden, NHS QIS clinical advisor and consultant clinical psychologist for NHS Forth Valley, said: “We have seen examples of how NHS Boards are making some good progress in improving access to health services for people with learning disabilities.
“However, there is more to be done, particularly in making sure that information and services are targeted to meet needs.”
Norman Dunning, chief executive of the charity Enable Scotland, said: “This is more than just another set of statistics.
“It exists so that we never again see the neglect and institutional discrimination that led to the unnecessary deaths of two people with learning disabilities in Scottish hospitals.
“We are disappointed that, in many areas, there is still insufficient attention given to making sure people with learning disabilities get equal treatment.
“We expect that those areas that have performed well will share their learning with
others and that NHS QIS will continue to hold health boards to account for their performance.”
One irony is that people with learning disabilities are more prone to sight loss.
Royal National Institute of Blind People Scotland said 80% people with a learning disability may also have some form of visual impairment.
A spokesman said one blind woman’s problems had been attributed to learning disability and “she had spent 80 years of her life in total isolation”.
‘If I had a wish list I’d like to
see more training on people
skills introduced’
CASE STUDY by Brian Donnelly
Individuals can be lost in a hospital system where staff need more training on how to deal with people with communication problems, and better advocacy in the community should be introduced to end the stigma created by exclusion and isolation, system users said yesterday.
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Isobel Allan, 61, whose 29-year-old daughter Susie has Rett syndrome and requires high levels of care, said often giving and receiving information can be the first barrier, and the size of the hospital system can cause problems.
She said: “I have seen improvements in the primary care sector, for example the introduction of learning disability teams who come into my home. That means I have access to a team of people, from a nurse to a social worker to a chiropodist.
“The work that still has to be done, from my point of view as a mother with someone who has very complex needs and communication problems, is in the acute care sector.
“Part of that I feel is due to the vastness of the hospital
structure, where individuals may well be lost. We should be able to bridge the gap.
“People are not engaging with those with learning disabilities and I think that is down to them not knowing how to do it.
“If I had a wish list I would like to see a lot more training on people skills introduced.”
Steven Robertson, 41, of Musselburgh, who has learning difficulties, said: “When I was younger you didn’t dare ask questions and the doctor was always right. It is better now but it’s not brilliant. We need more advocacy, a lot of people are still being excluded.
“There should not be special schools or special units in hospitals, they make you feel excluded.”
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The Press and Journal Published: 11 December 2009
Chiefs told to change procedures
Deaths of two Tayside vulnerable men prompts
high-profile criticism of health service
By Scott Macnab
NHS chiefs must improve access to treatment for people with learning difficulties, a report yesterday found.
It follows high-profile criticism of the health service after the deaths of two vulnerable Tayside men and the treatment they received.
The report by NHS Quality Improvement Scotland says that services are getting better but there are also areas where the health service still needs to make improvements.
Enable Scotland chief executive Norman Dunning said: “This is more than just another set of statistics.
“It exists so that we never again see the neglect and institutional discrimination that led to the unnecessary
deaths of two people with learning disabilities in Scottish hospitals.”
Health services in Dundee were criticised by a sheriff two years ago after the death of Roddy Donnet, 50, who had Down’s syndrome.
It followed the deterioration in the health of his mother, who had cared for him, and the way that hospital doctors and GPs subsequently dealt with his care.
A separate fatal accident inquiry in 2003 into the death of Jimmy Mauchland, of Dundee, called on hospitals to review how they deal with patients admitted with learning difficulties.
Mr Mauchland had spinal injuries after a fall in the hospital which went undiagnosed.
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There are more than 120,000 people with learning disabilities in Scotland.
The report says it should be easier for them to have planned visits to hospitals and health centres.
It is important that people with learning disabilities can get general health screening, hearing and sight tests and also out-of-hours services.
Immediate changes could be made by giving people more accessible information and improving signage.
Mr Dunning added: “It is reassuring to see that progress has been made.
“But we are disappointed that, in many areas, there is still insufficient attention
given to making sure people with learning disabilities get equal treatment.”
The report recommends that NHS boards ensure they comply with the Adults with Incapacity (Scotland) Act 2000, particularly in relation to how medical and other staff can legally make decisions about treatment on behalf of someone who cannot decide for themselves.
Dr Keith Bowden said: “We have seen examples of how NHS boards are making some good progress in improving access to health services for people with learning disabilities. However there is more to be done – particularly in making sure that information and services are targeted to meet needs.”
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The Scotsman Published: 11 December 2009
NHS 'must do more to help
vulnerable people'
By SHÂN ROSS
THE NHS must do more to provide better access to medical treatment for people with learning disabilities, in order to prevent lives being lost, a new report says. The Tackling Indifference report follows strong criticism of the health services after fatal accident inquiries into the deaths of Roddy Donnet and Jimmy Mauchland, two vulnerable men who died because of what campaigners described as "institutional discrimination". The report by NHS Quality Improvement Scotland (NHS QIS) said services for people with learning difficulties were getting better, but NHS Boards needed to improve in some areas. There are more than 120,000 people with learning disabilities in Scotland. The report says it should be easier for them to have planned visits to hospitals and health
centres, and it stressed the importance of general health screening, hearing and sight tests and out-of-hours services. Immediate changes could be made by giving people more accessible information and improving signage. Norman Dunning, chief executive of Enable Scotland, said: "This is more than just another set of statistics. It exists so that we never again see the neglect and institutional discrimination that led to the unnecessary deaths of two people with learning disabilities in Scottish hospitals. "It is reassuring to see that progress has been made, But in many areas there is still insufficient attention given to making sure people with learning disabilities get equal treatment."
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The report recommends NHS Boards ensure they comply with the Adults with Incapacity (Scotland) Act 2000, particularly in relation to how medical and other staff can legally make decisions on treatment on behalf of someone who cannot themselves decide. Dr Keith Bowden, NHS QIS Clinical Adviser, said there had been a number of examples of good practice, such as "double appointments' at the GP to give more time to find out what the problem is". He added: "However, there is more to be done – particularly in making sure information and services are targeted to meet needs." Two years ago, Sheriff Richard Davidson found medical staff should have reacted quicker after Mr Donnet, 50, from Dundee, who had Down's syndrome, failed to attend a clinic appointment for bowel disease. He died in May 2003 after a severe outbreak of ulcerative colitis went untreated. A separate fatal accident inquiry in 2003 into the death
of Mr Mauchland, 56, also from Dundee, called on hospitals to review how they dealt with patients admitted with learning difficulties. Mr Mauchland died in Ninewells Hospital, Dundee, from bronchopneumonia, malnutrition and spinal and neck injury resulting from a fall in hospital in January 2000, which went undiagnosed. 'No-one was taking the time
to find out what was wrong' STEVEN Robertson, 41, from Musselburgh, near Edinburgh, has learning disabilities and is director of People First Scotland, the campaigning group. He said: "One of the saddest things I heard about was someone with learning disabilities who was in hospital whose screaming was ignored because that's what they always did. But they had really bad toothache, and no-one was taking the time to talk to find out what was wrong." Mr Robertson added: "I certainly feel that at my own GP surgery I'm not so rushed as I used to be and that
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doctors are more willing to listen. "Campaigning has made me more assertive, but I also have a support worker to help with problems. "But I'm also older and have got a bit of life experience." 'Previously you weren't
consulted on treatments' ISOBEL Allan, a full-time carer for her daughter Susie, 29, who has profound learning difficulties, says she often feels frustrated at how suggestions from carers are ignored. Mrs Allan, 61, from Cambuslang in Glasgow, said: "I keep asking why the hospital can't issue us with a pager when we come for an appointment. Susie screams a lot and I could take her away from the main waiting area and get paged when she is about to be seen." Susie has Rett syndrome, a rare neurological disorder affecting mainly females, and is unable to walk. "Another thing is getting through to medical staff to treat people like human
beings," Mrs Allan added. "For example, dragging someone backwards in a wheelchair is highly insulting and dehumanising. "If I had a 'wish list', at the top would be for staff to have a lot more people skills." However, Mrs Allan said the situation began changing about five years ago, when carers became more vocal and NHS Quality Improvement Scotland began focussing on problems. "Previously you weren't listened to at all or consulted on treatments. There was a professional power-base system and you just weren't involved. "The key word is flexibility, but the paradox is that with the NHS you are dealing with a massive structure. "If Susie was going into an operating theatre it would be better to talk to me before drawing up the lists of times. It's difficult to tell her why she can't have breakfast and I could have asked for her to go in first. It wouldn't cost them anything but would help us tremendously."
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7 Find out more
If you want to find out more about the review and our recommendations, you can get some detailed information on our website: www.nhshealthquality.org/nhsqis/5988.html If you need help with the information on the website, you can ask your carer or support worker. If you would like help from NHS QIS, you can telephone 0131 623 4300 and ask to speak to a member of the learning disability team.
