'Cycling the hills to camp in the countryside.' "I've got my own life back and I'm living it my way." Picture: © Kevin Chettle, who painted it after moving from a long stay hospital into the community.
28 November 2014
BILD's response to the report of Sir Stephen Bubb for NHS England
People with learning disabilities in England are being kept in hospitals far from home for too long says Sir Stephen Bubb's report into the future care of people with learning disabilities. The report recommends introducing a charter of rights and more community facilities for people with learning disabilities. It also says some "inappropriate" in-patient facilities should be closed.
About 2,600 people with learning disabilities or autism and additional mental health needs remain in inpatient settings despite the government’s 2012 commitment to end inappropriate such placements by June this year – its key response to the Winterbourne scandal.
Sir Stephen, chief executive of the Association of Chief Executives of Voluntary Organisations (ACEVO), was asked by NHS England how to address "serious shortcomings" in support for those with learning disabilities.
The report - Winterbourne View - Time for Change - offers 10 recommendations for the NHS, local government, regulators and the government. Download the report >
“We welcome anything that improves support for people with learning disabilities and families and the capacity of the sector to provide that support, but, in response to yet another report identifying the same problems the real challenge is for the Government and NHS England to now quickly demonstrate how they plan to change things - that they have a plan, that they have the funding and that they have the will and the leadership to make real change happen.
Stephen Bubb's report highlights the need for a 'Bill of Rights' for people with learning disabilities.
The question is, do the Department of Health, NHS England, the Care Quality Commission, local authorities and clinical commissioning groups really need another charter to understand that people with a learning disability and their family members have the same rights as every other citizen?
Their rights are already clearly set out in the Equality Act, the Human Rights Act, the Mental Capacity Act, the NHS Constitution and the UN convention on the rights of persons with disabilities, which the UK ratified in July 2009.
In reality, is the real issue that many people with a learning disability and people with autism and their carers are unaware of their rights and what they can do to ensure their rights are upheld? Are many professionals in the field not as familiar as they should be with the rights people with learning disabilities already have, and particularly their critical role in upholding those rights?"
Read BILD's response in full >
The response: 'Three years after Winterbourne View - yet another plan'
Such a high profile report on such an important subject was bound to provoke a response. The general feeling is that whilst the most important issues are brought out in Stephen Bubb's report - particularly the need for the rights of the people being placed in inappropriate settings, and their families, to increase, particularly their right to be consulted and to challenge decisions - the report sets out the issues, but doesn't propose many concrete actions.
We must now wait for NHS England - who commissioned him to write this report - to come forward with their plan of actions and timescale for change.
"We know about things, we have life experience and when we are at the heart of things they are not tokenistic. This is the right way forward. Thank you to Stephen Bubb and the steering group for doing that, you have listened and included what we said at the very heart of this report. It's our lives” CHANGE's response in full >
Gary Bourlet from People First England: "The report is full of good words. But there's not much here that hasn't been said before. We need someone to take charge of making change happen. And that person should be working alongside someone with a learning disability. We call that co-working. And we need a timetable as well."
Disability Rights UK: 'Learning disabilities: Time for Change Report'
NDTi: 'The Bubb Report – Neither Right nor Wrong'
Chris Hatton's blog: 'The times, they are (not) changing'
Steve Broach writes a blog called Rights in Reality, he's posted a response, 'The Bubb report – forget boat rocking, we need boat breaking'
BBC: 'Care for people with learning disabilities 'failing', report says'
Community Care: 'Latest plan to end inappropriate learning disability care revealed, following failure to meet Winterbourne target'
Guardian: 'Three years after Winterbourne View, yet another plan'
Guardian Social Care Network: 'Bubb report into care of people with learning disabilities: views from the sector'
Guardian Society: ‘We must stop learning disabled people being dumped in waste bins of life’
28 February 2014 Health - how to get it right for people with a learning disability
The trial of a new training programme for hospital staff, called ‘How to get it right for people with a learning disability
’ has begun at Great Ormond Street Hospital for Children NHS Foundation Trust in partnership with BILD.
A first for both organisations and a very exciting innovation, the training is being led by Jim Blair, Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street and BILD Advisor on Health.
The core principles underpinning the training are:
- Value driven - children and young adults can contribute to their care
- Positive communication - increase the use of positive terminology and place an emphasis on appropriate communication
- Appreciate the interaction - between the individual and their environment. Understand the child's life experiences and how they express themselves
- Increase independence - while acknowledging the stage or age of a child it is important to focus on developing the child or young person's independence
- Promote emotional literacy - ensure that children and young people have opportunities to express themselves and help and support them to understand their own feelings
- Create a positive environment - a welcoming setting...it is important to acknowledge each child's individuality, culture and life experience so that they are valued and important members of the hospital community
- Focus on individual support - each person is an individual and will respond to positively being addressed by their name and if the service takes into account their needs rather than merely those of a group
- Work towards achievable goals - set goals that motivate and are achievable within a timescale that is reasonable for that child and or for the service they are using
The Learning Outcomes:
- Outcome 1: Explain was is meant by: learning disability, autism and challenging behaviours
- Outcome 2: Explain and demonstrate what reasonable adjustments are
- Outcome 3: Work out whether or not someone understands what is being offered them re-their health
- Outcome 4: Appreciate how and why communication is so important
The training will ultimately be aimed at all staff but at present the focus is on Outpatient staff - Clinic Assistants, Receptionists, Play Workers and Nurses. There are 41 staff doing it in total and there are two sessions for staff to attend, each 2 hours long.
The training started this week and 26 out of 41 staff at Great Ormond Street have undertaken the first session. The two sessions are separated by a few weeks so in that time staff can make reasonable adjustments to how they work with people with learning disabilities. So they are the change they wish to see and adjustments can then be embedded in their work to improve the care and treatment
These are some of the comments from those who have attended sessions so far about what they have learnt and can now do differently: "Now that I’m more aware I can offer more help and support now I know what they need"
"I feel I understand more how they struggle with appointments and I would want to help"
"To improve communication and more visual"
"Allow time for them to understand a procedure. Use appropriate language / visual, etc"
"How to try to make the environment better to meet the need of the child"
"I've learnt about the hospital passport"
Once the training has taken place and the evaluations are been analysed, BILD, in partnership with Great Ormond Street Hospital for Children NHS Foundation Trust will create a training pack that can be used in other hospital settings to aid understanding of staff in how they can get it right for people with a learning disability.
28 February Death of 18-year-old in failing NHS learning disability unit was preventable
The death of an 18-year-old man in a failing NHS learning disability unit was preventable and followed significant failings in his care, an inquiry has found.
Connor Sparrowhawk, pictured above, died last July after being found submerged in a bath following an epileptic seizure at the short-term assessment and treatment team unit run by Southern Health NHS Foundation Trust.
"He was a remarkable young man who was failed by those who should have kept him safe”, said Sara Ryan, Connor's mother More > The 'My daft life blog' is written by Sara Ryan, Connor's mother >
12 February 2014
Confidential Inquiry - film of findings
The Confidential Inquiry into premature deaths of people with learning disabilities reviewed the deaths of 247 people with learning disabilities within 5 Primary Care Trusts in the South-West of England. The Inquiry reported its findings last year and now a film has been made which presents the findings of the Confidential Inquiry through the stories of John, Bill, Karen and Emily. Watch the film >
24 January 2014
BILD health survey gets a great response - now to change things!
To coincide with BILD conference last October, we carried out an online health survey with the help of Jim Blair, Consultant Nurse Learning Disabilities at Great Ormond Street Hospital and BILD’s Advisor on Health. We got a great response - over 300 people took the trouble to do the survey. Thank you to everyone that did.
The aim was to find out about current health services for people with learning disabilities - to find out what's good, but also where improvements need to be made and how we can make things better. In particular, we wanted to find out about people’s perceptions of reasonable adjustments and the mental capacity act in healthcare.
Jim has since been analysing the results collected in this survey in order to identify the key issues that BILD needs to address. The first area we looked at, because of the need to feed into the House of Lords Committee reviewing the operation of the Mental Capacity Act (MCA), were the questions in the survey about the MCA. The survey results on the Mental Capacity Act
- 21 people with a learning disability responded to the questionnaire. 70% (14) of the people with learning disabilities who responded to this questionnaire either did not answer the question or did not know about the MCA.
- 70 parent / carers responded. 48% (33) of those who responded not complete this question. Of the 37 who did only 3% (8) felt there were no problems
What we learnt
- 168 health professionals responded. 10% (17) felt that they had no concerns and 26% (44) did not answer the question. 64% (107) have concerns about the mental capacity act as it is used in healthcare for people with learning disabilities.
People with learning disabilities, parents and carers and professionals all have concerns about:
- The ability of those assessing a person's capacity to do it properly
- More training is required - not a lot of understanding about the MCA among each group questioned in the survey
- Assumptions are made about a person's capacity over or underestimating
- Mental Capacity assessments should be done over a period of time (where possible)
- MCA training should be mandatory
People with learning disability told us that they would like people assessing capacity to:
- Take more time
- Not use big words (jargon)
- Know more about people with learning disabilities
- Involve parents and people who know they person with learning disabilities well
Parent / carers also told us that they would like to see MCA specialists within the health service.
Health professionals said:
- Guidance with clear examples (practical) is needed
- Best interest meetings should take place more often
- Quality of life assumptions are made e.g. Do Not Attempt Resuscitation
- Health professionals still gaining 'consent' from other people other than the person themselves
- Not enough resources used (available) to aid assessment
- National framework for health professionals in training and after qualifying should be created
Our first action has been to pass these results to Baroness Sheila Hollins, who sits on the House of Lords Committee on the Mental Capacity Act 2005, through Jim Blair. Jim will also be writing an article based on the issues around the Mental Capacity Act highlighted by the survey.
Jim says: "I think the findings from the BILD health questionnaire relating to Mental Capacity Act demonstrate that there is much to do in ensuring better understanding by people with learning disabilities, parents and carers and health professionals.
BILD will push for the findings to happen and seek to ensure that in partnership with others the issues raised are taken forward to enhance the lives of people with learning disability. It is vital that training on the Mental Capacity Act is mandatory for all health professionals during their initial training and throughout their careers.
A national framework for such teaching along with a specific qualification for health professionals in the Mental Capacity Act would go a long way to improving the lives and outcomes of people with learning disabilities and their families when using health services."
10 October 2013
Confidential Inquiry Events - presentations available to download
The CIPOLD team have made the presentations that they used on in their recent review meetings available to download to the public. Download them from their website >
30 September 2013
NICE Consultation on potential future public health quality standard topics
NICE quality standards are a concise set of prioritised statements designed to drive measurable quality improvements within a particular area of health or care. They are developed from existing guidelines developed or accredited by NICE. Quality standards consider the complete care pathway, from public health to health and social care. Although some standards will be area specific, there will often be significant overlap across areas and these are considered during development of the standard.
NICE wants to hear from stakeholders to help decide on potential further topics for quality standard development to help improve the quality of public health. Where there are no existing relevant guidelines, this topic list will inform the development of future guidelines.
The consultation will be open from 27th September - 20th of December. Responses must be submitted to QSconsultations@nice.org.uk Find out more >
21 August 2013
Confidential Inquiry Events
The Confidential Inquiry into premature deaths of people with learning disabilities was funded by the Department of Health and reported its findings earlier this year.
It reviewed the deaths of 247 people with learning disabilities within 5 Primary Care Trusts in the South-West of England. It also reviewed the deaths of 58 people without learning disabilities to place the findings in context.
The study reveals that the quality and effectiveness of the health and social care given to people with learning disabilities was deficient in a number of ways. Key recommendations are made which, were they individually and collectively implemented, would lessen the risk of premature death in people with learning disabilities.
The Department of Health has recently issued a formal response to the findings of the Confidential Inquiry and recognises that we all have a part to play in reducing premature deaths of people with learning disabilities.
The Confidential Inquiry team are running a series of free events across England this autumn to discuss the findings of the Confidential Inquiry and how to take forward the recommendations.
15 July 2013
Six Lives: Department of Health progress report on healthcare for people with learning disabilities
In 2009, the Parliamentary and Health Service Ombudsman and Local Government Ombudsman issued their report Six Lives: The provision of public services to people with learning disabilities which investigated the deaths of the six people with learning disabilities that were highlighted in Mencap’s 2007 report Death by Indifference.
The Department of Health (DH) have now published their second report, Six Lives: Progress Report on Healthcare for People with Learning Disabilities which outlines the progress made in delivering the recommendations from the initial Six Lives report, what has been achieved so far and what still remains to be completed.
In seeking to measure the progress that has been made, the DH has gathered quantitative and qualitative information from reports produced since 2010 and the views and experiences of health and social care professionals, service providers and learning disability organisations.
Most importantly, the progress report has listened to people with learning disabilities and family carers and has used their experiences to shape the report and to measure progress. This has included working in partnership with BILD and Mencap to hold a joint listening event called Getting Better? in April 2013.
As part of this process, a survey about healthcare was completed by people with learning disabilities and family carers and this has provided a rich source of views, experiences and stories. A copy of the report, Is Healthcare Getting Better for People with a Learning Disability? from the listening event, and the survey results are published alongside the Six Lives: Progress Report on Healthcare for People with Learning Disabilities
What is changing?
There are some examples of improvements that have been made over the past three years. Over a third of adults with a learning disability now have a personal budget, there has been an 8% increase in the number of adults living in their own or family homes and there has been a 20% increase in annual health checks.
The evidence provided from people with learning disabilities and their family carers has enabled the Department of Health to identify the most important issues that still need to be addressed alongside the improvements made.
Things going well in healthcare
- Reasonable adjustments being made
- Staff having a positive attitude towards people with a learning disability.
- Involving people with a learning disability and their families/carers.
- Employment of learning disability nurses.
- People in hospitals doing what the law requires in the Mental Capacity Act
Things not going well in healthcare
- It takes too long to find out what is wrong with someone and start treatment
- Annual health checks are not done properly
- People with learning disabilities are not given information in a way they can understand
- People who work in hospitals do not always realise when someone is in pain
- People are not included in decisions about their care.
Improvements, but concerns about overall quality
The report stresses the importance of a person-centred approach to healthcare, including the development of personal health budgets, flexible and creative approaches to reasonable adjustments and the delivery of annual health checks. The contribution of learning disability nurses in facilitating effective healthcare has also been identified as very significant in changing culture and attitudes.
However, concerns continue to be raised about the overall quality and accessibility of the health support available to people with learning disabilities. Whilst there are increasing numbers of annual health checks being carried out, there are rising concerns about their quality and effectiveness.
In addition, the report identifies that there is a unique opportunity presented by the Health Equality Framework to help commissioners, providers, people with learning disabilities and family carers determine the impact and effectiveness of services.
In order to further reduce health inequalities and improve outcomes for people, there is still a need for robust data to provide a better understanding of people’s health needs and to inform planning. The identification of people with learning disabilities within healthcare settings remains poor and fragmented, but the quality of information is improving and its use in promoting good practice, commissioning, benchmarking and accountability is significant.
However, it must be recognised that people with learning disabilities and their families continue to share their negative experiences in accessing and receiving health care including capacity and consent issues; complex, long winded complaints processes and a lack of access to advocacy services.
A lack of understanding of learning disabilities
Central to the many concerns raised again in this report is the lack of understanding and awareness about learning disabilities and how to provide good support. Healthcare staff need to be committed to delivering on equalities requirements and especially in making ‘reasonable adjustments’ that make a real difference to people’s lives and enable the delivery of respectful support.
However, whilst the progress report provides many examples of good practice, it is clear that there remains much work to be done to change attitudes and the culture in many health services. They need to improve communication with people with learning disabilities, and provide both general and specific information in a way that each individual understands. When the care of people with learning disabilities has fallen below standard, there should be an effective fast track system for complaints and immediate access to advocacy services.
A need to listen more and better
Unfortunately, many examples of poor care are outlined which demonstrate a lack of compassion in the treatment of individuals including poor or late diagnosis and treatment, diagnostic overshadowing and poor pain management. These are reoccurring issues that emphasise the need to improve how services listen to individuals and their family carers and make changes, putting them at the heart of everything they do.
The progress report has identified many areas of improvement since 2009, but it also highlights further difficulties that need to be resolved to address the ongoing and widespread systemic failings in the healthcare provided for people with learning disabilities.
People at the listening event were concerned that progress was often happening because of individual ’champions’ who were leading change in their area. People with learning disabilities and family carers were not yet convinced that real cultural and attitudinal change is happening. The progress report emphasises the need to work in partnership with people with learning disabilities and their families to promote good practice in healthcare, to strengthen leadership and change working cultures so that better healthcare outcomes are achieved in the future.
People with learning disabilities still face unacceptable inequalities in healthcare - a Department of Health press release >
Download the Department of Health's Six Lives Second Progress Report and the easy read version >
Are things getting better?
BILD and Mencap ran a consultation, with the Department of Health, to find out from people with learning disabilities and family carers about their experiences of using the health service and what they think needs to change.
Together we have produced a joint report, called Getting Better?, which reports on the consultation and what people with learning disabilities and family carers said. You can also download the results of the online survey.
Download the Getting Better? consultation reports and survey data:
Watch the Getting Better? videos
At the Getting Better listening event we videoed people's telling us their experiences of healthcare, as well as what they think needs to change or be improved.
You can watch them by clicking on the links below. If you want to make the video bigger, just click on the full screen symbol in the bottom right hand corner.
The main Getting Better video
The video corner - people talking about their experiences and what needs to change
A presentation by Jim Blair, Learning Disability Nurse Consultant at St George's Hospital, and members of LD our Health Our Hospital group