Quality of Health Principles
The Confidential Inquiry into the Premature Deaths of people with Learning Disabilities identified gaps in the quality of care and poor outcomes for people with learning disabilities. We know that the NHS does not always treat people who have a learning disability as well as it should. Too often people with learning disabilities are not given the support they need to be able to use the services they need. Many have physical health problems that are not noticed, or are not treated properly.
NHS England is responsible for making the quality of health care that people receive in England better. The Government has asked NHS England to make improvements to the NHS by stopping people from dying where possible, improve the lives of people who have long term health problems, helping people to recover when they are unwell, or if they get hurt, ensuring that people have a positive experience of care and that people are safely treated and cared for people. Their vision document will set out how they plan to improve the NHS for everyone, making sure that they think about the things that people with a learning disability, autism and family carers need as part of this work.
In December 2012 Changing Our Lives facilitated a conversation between the board of NHS England and self-advocates with learning disabilities, autism and family carers from around the country in a session to explore how people with learning disabilities experience NHS services. Following that meeting a commitment was given to follow up the session to ensure that NHS England reflects the needs of people with learning disabilities and autism in its work.
NHS England kept to their commitment and on Friday 30th May Changing Our Lives facilitated another conversation to share the work of NHS England and give people the opportunity to influence their vision and stamp learning disability on the NHS. The session was led by Self Advocacy Officers, Gemma Caffrey and Siraaj Nadat and NHS England 'tag team' Sir Mike Richards and Martin McShane who set out the vision for the NHS. They later talked about how much they had enjoyed the session and what they had heard, going on to describing what they want to see for the future in the NHS, "Individuals within the NHS that go the extra mile, rather than a systematic approach". They set out their commitment to capture the main messages that they had heard from people with learning disabilities and their families and build them into the overall plan for NHS England accompanied with a timeline for the series of actions.
NHS England will publish a vision document in the summer, which will set out how it plans to deliver better outcomes in these areas for people who use the NHS. This will be strengthened by the appointment of a National Clinical Director for Learning Disability.
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NHS England is responsible for making the quality of health care that people receive in England better. The Government has asked NHS England to make improvements to the NHS by stopping people from dying where possible, improve the lives of people who have long term health problems, helping people to recover when they are unwell, or if they get hurt, ensuring that people have a positive experience of care and that people are safely treated and cared for people. Their vision document will set out how they plan to improve the NHS for everyone, making sure that they think about the things that people with a learning disability, autism and family carers need as part of this work.
In December 2012 Changing Our Lives facilitated a conversation between the board of NHS England and self-advocates with learning disabilities, autism and family carers from around the country in a session to explore how people with learning disabilities experience NHS services. Following that meeting a commitment was given to follow up the session to ensure that NHS England reflects the needs of people with learning disabilities and autism in its work.
NHS England kept to their commitment and on Friday 30th May Changing Our Lives facilitated another conversation to share the work of NHS England and give people the opportunity to influence their vision and stamp learning disability on the NHS. The session was led by Self Advocacy Officers, Gemma Caffrey and Siraaj Nadat and NHS England 'tag team' Sir Mike Richards and Martin McShane who set out the vision for the NHS. They later talked about how much they had enjoyed the session and what they had heard, going on to describing what they want to see for the future in the NHS, "Individuals within the NHS that go the extra mile, rather than a systematic approach". They set out their commitment to capture the main messages that they had heard from people with learning disabilities and their families and build them into the overall plan for NHS England accompanied with a timeline for the series of actions.
NHS England will publish a vision document in the summer, which will set out how it plans to deliver better outcomes in these areas for people who use the NHS. This will be strengthened by the appointment of a National Clinical Director for Learning Disability.
Changing Our Lives is developing a Quality of Health toolkit which will explain how to support teams of people with disabilities to review health services.
The toolkit will contain training resources for reviewing teams and examples of best practice in co-production. Part of this work will involve us piloting Quality of Health reviews in four areas across England.
These pilots will focus on the experiences of people with learning disabilities and autism. If you want to find out more download our flyer or email This email address is being protected from spambots. You need JavaScript enabled to view it.
We have used the Quality of Health Principles to carry out reviews in Sandwell of dentists, pharmacists, the general hospital and GP surgeries. As part of the review process we trained GPs and the receptionist and administration teams of local surgeries in an awareness of earning disabilities and accessible communication. The team of reviewers checked how these services supported people with learning disabilities using various review methods including, interviews, observations and even mystery shopping! In the next couple of months we will be carrying out audits of a selection of Sandwell opticians and pharmacies. We will also be training local dentists in how to make reasonable adjustments in their service to support people with learning disabilities.
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In December, Siraaj Nadat, Changing Our LIves self advocacy officer, attended an All Party Parliamentary Group Meeting, at the Houses of Parliament. Norman Lamb, the Care and Support Minister came to inform the group about the government's plans and what they are going to put in place, to prevent what went on at Winterbourne View from happening again. Tom Clarke chaired the meeting and after the opening remarks, Ann Earley who is the mother of Simon, a young man that lived at Winterbourne spoke about the experience of her son and family. The meeting was very well attended including people from Mencap, the Confidential Inquiry, National Forum of people with Learning Disabilities, family carers and the General Medical Council. There was an opportunity to ask questions to the Minister and Ann Earley.
It was really interesting to hear what the family had been through, what they would have done differently and how they never gave up hope. It was also a great to see the Ministers determination and enthusiasm to learn from this and work in partnership to make a difference to the lives of people with learning disabilities.
The Minister talked about his concerns in relation to complaints, safeguarding procedures, lazy commissioning and institutional abuse, saying that "It is not just about the Government saying what they will do, but inherent nationally to end a scandal. Every part of the system needs to step up to the plate and take responsibility".
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It was really interesting to hear what the family had been through, what they would have done differently and how they never gave up hope. It was also a great to see the Ministers determination and enthusiasm to learn from this and work in partnership to make a difference to the lives of people with learning disabilities.
The Minister talked about his concerns in relation to complaints, safeguarding procedures, lazy commissioning and institutional abuse, saying that "It is not just about the Government saying what they will do, but inherent nationally to end a scandal. Every part of the system needs to step up to the plate and take responsibility".
In 2011 Panorama revealed harrowing abuse of people with learning disabilities at Winterbourne View, a Castlebeck assessment and treatment hospital near Bristol. As a result of criminal proceedings, eleven care workers admitted 38 charges of either neglect or ill-treatment of people with learning disabilities. Six members of staff were jailed for a total of seven years and four months and five received suspended sentences. The abuse included residents being slapped, soaked in water, taunted, trapped under chairs, sworn at and having their hair pulled and eyes poked.
The Department of Health's interim report on Winterbourne View calls for a range of actions at a national level to drive up the quality of support provided to people with learning disabilities who have the label "challenging behavior" so they can receive high quality, person centred healthcare and be supported to lead valued lives in the community, rather than being segregated in hospital settings.
One of the key actions within the report is for the Department of Health to embed Changing Our Lives 'Quality of Health Principles' into national NHS contracts by Spring 2013 to ensure that when people with learning disabilities receive healthcare, it is of the highest possible standard. The report also commends Changing Our Lives user led audits as best practice and calls for more user led audits to drive up standards of care.
These actions are urgently needed as the latest BBC Panorama programme to be broadcast on 29th October 2012 will reveal that 19 out of the 51 patients moved from Winterbourne View have been subject to "safeguarding alerts" in their new settings, with at least one having been assaulted.
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The Department of Health's interim report on Winterbourne View calls for a range of actions at a national level to drive up the quality of support provided to people with learning disabilities who have the label "challenging behavior" so they can receive high quality, person centred healthcare and be supported to lead valued lives in the community, rather than being segregated in hospital settings.
One of the key actions within the report is for the Department of Health to embed Changing Our Lives 'Quality of Health Principles' into national NHS contracts by Spring 2013 to ensure that when people with learning disabilities receive healthcare, it is of the highest possible standard. The report also commends Changing Our Lives user led audits as best practice and calls for more user led audits to drive up standards of care.
These actions are urgently needed as the latest BBC Panorama programme to be broadcast on 29th October 2012 will reveal that 19 out of the 51 patients moved from Winterbourne View have been subject to "safeguarding alerts" in their new settings, with at least one having been assaulted.
On October 23rd Siraaj Nadat, Self-Advocacy Officer with Changing Our Lives, attended the All Party Parliamentary Group (APG) at The Houses of Parliament. All-Party Groups (APGs) are informal cross-party groups that are essentially run by and for Members of the Commons and Lords, although many groups involve individuals and organisations from outside Parliament.
Siraaj was invited to attend as part of a panel of experts in their field from The Learning Disability Health Observatory and The Confidential Enquiry into the deaths of people with learning disabilities. This APG was to present the work that they been doing over the last 3 years. Healthcare for All, the report of the Independent Inquiry by Sir Jonathan Michael, that followed Death by Indifference said, "One problem we had was that we didn't know enough about the experience of people with learning d
isabilities in health services. People with learning disabilities were often not identified in health care systems and were therefore invisible".
Sir Jonathan Michael recommended that there should be a Confidential Inquiry into the deaths of people with learning disabilities and a Learning Disabilities Public Health Observatory. The APG was very well attended and Tom Clarke, MP Chaired the meeting. Delegates included Baroness Howe of Idlicote, Parliamentarian and Mark Goldring, CEO Mencap. Siraaj said, "It was amazing to go and speak at The Houses of Parliament. I felt very proud and honoured to have been invited to be part of a meeting at such a prestigious venue. It just took my breath away".
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Siraaj was invited to attend as part of a panel of experts in their field from The Learning Disability Health Observatory and The Confidential Enquiry into the deaths of people with learning disabilities. This APG was to present the work that they been doing over the last 3 years. Healthcare for All, the report of the Independent Inquiry by Sir Jonathan Michael, that followed Death by Indifference said, "One problem we had was that we didn't know enough about the experience of people with learning d
isabilities in health services. People with learning disabilities were often not identified in health care systems and were therefore invisible".Sir Jonathan Michael recommended that there should be a Confidential Inquiry into the deaths of people with learning disabilities and a Learning Disabilities Public Health Observatory. The APG was very well attended and Tom Clarke, MP Chaired the meeting. Delegates included Baroness Howe of Idlicote, Parliamentarian and Mark Goldring, CEO Mencap. Siraaj said, "It was amazing to go and speak at The Houses of Parliament. I felt very proud and honoured to have been invited to be part of a meeting at such a prestigious venue. It just took my breath away".
On 19th October Changing Our Lives held a Quality of Health Conference at the Midlands Arts Centre. The conference showcased the Quality of Health Principles; a set of best practice standards that have been developed by people with learning disabilities in partnership with their peers with physical and sensory disabilities, people on the autistic spectrum, people with mental health issues and older people. Our self advocates used factual but fun 'roving reporter' films and presentations to tell health providers and commissioners what people who are 'vulnerable' expect in terms of person centred healthcare. They successfully demonstrated the power of user led audits and the positive impact these have on the health experiences of people with learning disabilities.
The Principles have been used by people with learning disabilities as the basis for audits of health services including a general hospital, mental health services, GP practices, pharmacies and dentists. We highlighted the positive changes that have taken place in these healthcare services for people with learning disabilities as a result of the audits.
The conference was well attended by key senior figures from health and social care from across the West Midlands and a live twitter feed helped to highlight key issues. Professor Steve Field, Chair of the NHS Future Forum and also the National Inclusion Health Board, closed the conference saying, "Your presentations were wonderful and gave me great hope. The work you are doing is great and is influencing the national commissioning board at the highest level. The Principles will be included in NHS contracts for 2013".
You can view photos, download a the presentations and read the speaker's biographies below.
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The Principles have been used by people with learning disabilities as the basis for audits of health services including a general hospital, mental health services, GP practices, pharmacies and dentists. We highlighted the positive changes that have taken place in these healthcare services for people with learning disabilities as a result of the audits.
The conference was well attended by key senior figures from health and social care from across the West Midlands and a live twitter feed helped to highlight key issues. Professor Steve Field, Chair of the NHS Future Forum and also the National Inclusion Health Board, closed the conference saying, "Your presentations were wonderful and gave me great hope. The work you are doing is great and is influencing the national commissioning board at the highest level. The Principles will be included in NHS contracts for 2013".
You can view photos, download a the presentations and read the speaker's biographies below.
On the 16th of October Richard Johnson and Jessica Bromley presented at the 'Better Dental Services for People with Learning Disabilities' Conference in Birmingham. The conference was hosted by the Improving Health and Lives: Learning Disabilities Observatory and the National Development Team for Inclusion. It was attended by professionals from around the country including Dentists and Healthcare Commissioners. Richard and Jessica presented the main themes from their recent audit of a high street dentist and a specialist dental service. The professionals were particularly interested in how they could make their information more accessible for people with learning disabilities and have asked to be kept informed on how future audits develop.
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Over recent years, the deaths of people with learning disabilities in health services has been bought to public attention in reports such as Mencap's "Death by Indifference: 74 and Counting". Similarly, the Department of Health's recent report into the abuse of people with learning disabilities at Winterbourne View highlights the need for better commissioning and monitoring of health services, and stresses the importance of user led auditing as one way the quality of services can be checked.
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