Disability Manifesto 2017: The NHS

With just a few more days till the General Election, SPECTRUM Centre for Independent Living is today focusing on the NHS. The aim of the Disability Manifesto is to highlight the issues that Disabled People feel ALL political parties should commit to, following the General Election. We welcome your feedback on our Facebook page or via Twitter using the hashtag #DisMan17



Disabled People, particularly People with Learning Difficulties or Mental Health Conditions, experience significant and persistent health inequalities and are likely to die younger than other people.i They are also much less likely to receive health checks, screening tests and other routine healthcare treatment.

Disabled People are less likely to report positive experiences in accessing healthcare services.

Despite a commitment by the Government to make improvements to the provision of mental health services, considerable shortcomings remain. Disabled adults are more likely to report poor mental health and wellbeing than non-disabled adults.

There is also considerable evidence of low levels of disability awareness among NHS staff, inadequate healthcare treatmentii and access barriers to health services.iii

We call on all political parties to commit to eliminating health inequalities faced by Disabled People by 2025. This is a challenging target but one that can be achieved if the will is there to do so.

We also call on all political parties to commit to ensuring that Disabled People are able to access NHS services on an equal basis as everyone else. This can be achieved as part of a wider improvement programme – particularly in primary care, where many people face difficulty accessing services because of restricted opening times and procedures.

We also call on all political parties to commit to ensuring that mental health services are given equal priority to physical health services in the NHS.

We also call on all political parties to guarantee to close, within the first year of the next Parliament, the remaining hospitals in England where People with Learning Difficulties are still being sent, despite promises to end the practice in the wake of the Winterbourne View abuse scandal.

If you want to read the full manifesto, please visit our Disability Manifesto page.

i Equality and Human Rights Commission (2010) How Fair is Britain, Equality, Human Rights and Good Relations in 2010’, Chapter 6; Review of Mental Health and Learning Disability (Northern Ireland) (2005) Equal Lives Review of Policy and Services for People with a Learning Disability in Northern Ireland, p. 29; NHS Health Scotland (2004) People with Learning Disabilities in Scotland: The Health Needs Assessment Report’;

ii Disability Rights Commission (2006) Equal Treatment – Closing the Gap. disability-studies.leeds.ac.uk/files/library/DRC-Health-FI-main.pdf

iii Disability Rights Commission (2006) ‘Equal Treatment: Closing the Gap’; Redley M et al (2012) ‘Healthcare for men and women with learning disabilities: understanding inequalities in access’, Disability and Society, Vol. 27, No. 6: 747–759; BMA (2014) ‘Recognising the importance of physical health in mental health and intellectual disability’.


SPECTRUM 2017 Disability Manifesto out now!

There are more than 13.3 million Disabled People and people with long-term health conditions in the UK – a very sizeable part of the electorate in 2017.

We believe it is essential for Disabled People’s voices to be heard in the debates around the 2017 General Election – not only because they represent a large number of votes but, more importantly, because they are deeply affected by so many of the key issues at the heart of political debate.

On the 25th May 2017, SPECTRUM Centre for Independent Living will be launching our Disabled People’s DISABILITY MANIFESTO – a pragmatic and realistic range of proposals which shows how the Government, any Government, could address the unfairness, the indignities and the discrimination that Disabled People have faced because of austerity measures.manifestocover2017


The launch of the DISABILITY Manifesto will be the start of our campaign to bring the needs, and the solutions that Disabled People are proposing, to the eyes and minds of the electorate, and into the minds of politicians and policy makers.

Departures, Arrivals and Swaps in the Independent Living Team

After 10 years of working at SCIL, Maureen Harris has decide to retire as a Direct Payments Support Worker in order to enjoy a new life with her new husband. Maureen first had contact with SCIL as a Direct Payments user before becoming a Direct Payments Support Worker, specifically supporting people with mental health issues. Over the years, her knowledge and expertise led her into speaking at a number of high profile national conferences where she challenged the notion that people with mental health issues couldn’t cope with Direct Payments.

Her commitment to SCIL was underlined when she also took on the role as SCIL treasurer, a role she intends to maintain. Maureen will also remain on the Personalisation Expert Panel

We are pleased to announce that as Maureen departs, Chris How has joined the Independent Living Team as a Direct Payments Support Worker. Chris has been an active volunteer in the ETC team helping to organise the Young Disabled People forum. His enthusiasm for SCIL is obvious and he is already proving to be a real asset to the team.

The size and demands on the team is rapidly expanding so we have taken on Amanda Foster, Ami’s work support assistant, as a temporary Admin Assistant whilst Ami is on maternity leave.

Liz Hartley-Rowe, Maureen’s work support assistant, has been taken on by David Blake.

We will be announcing more changes soon………

Mixed Feedback to HCC Personalisation Commission

Ian Loynes and Robert Droy from SCIL recently attended the first session of the Hampshire Personalisation Commission. Throughout the day, we discussed with members of the audience how they felt about the Commission and their observations of the first session.


Firstly without wishing to be overly negative, the format and acoustics of the venue was not particularly accessible for many of the participants. There was no sign language interpreter at the session but we presume this would have been provided if an participant had requested it. We were also disappointed with the lack of diversity amongst both the commissioners, witnesses, and the audience in general. ‘White, middle aged, and middle class’ was one comment we heard.


Despite the session being entitled ‘People and Carers’, out of the 7 people who gave evidence, 3 people were actually ‘professionals’ who gave lengthy presentations which were followed up by questions. Their evidence, whilst useful, may have been better suited to a later session.


In contrast, the ‘people’ and ‘carers’ were asked to give very brief presentations with no opportunity for the commissioners to question them further. We feel this was a missed opportunity to really capture from the ‘users’ themselves why personalisation was so important. This part of the evidence was summed up by the Commission Chair as ‘moving’ and ‘uplifting’. Whilst these comments were well meaning, they were construed by many as slightly patronising and not viewing the evidence on an equal level as the evidence given by the other witnesses.


The round table discussions in the afternoon were found to be much more successful but unfortunately were only open to a ‘select’ group of invited guests. Some of the common themes have however been summarised in a document on the Hampshire Personalisation Commission website, along with much of the other evidence and presentations at each session.


The next session is on June 12 and you can apply for tickets for that session until May 20 by visiting the website or by calling 01962 833 040. Leave your name, telephone number and address and they will post an application form to you


Mental Health Experts By Experience

NCIL are looking to recruit Mental Health Experts by Experience for  the next stage of this exciting project. This project is funded through the Commission for Social Care Inspection. The Commission is the body that inspects and regulates social care provision for England. The project is working with a range of Centres for Independent Living and user led organisations in order to develop a diverse pool of Experts.


We are particularly looking for people who use Mental Health Services, across the following regions in England which will support the Commission’s inspection processes.


·         South East

·         South West

·         London

·         Eastern

·         East Midlands

·         West Midlands

·         Yorkshire & Humberside

·         North West

·         North East


As a Mental Health Expert you will be linked to a Centre for Independent Living or user led organisation in one of the above regions, you will be provided with training and support to develop your skills for this role and you will be paid an hourly fee of £15.00.  The amount of hours will vary.  All other associated costs will be met, including travel, access costs and personal assistance costs.


Experts by Experience will be part of the Inspection process and will be required to undertake inspections in different regions.


You will need to be a person who uses services, or has used services or is likely to use services, you will need to be willing to travel across your particular region and occasionally into other regions, and you will need to be willing to attend training and briefing days in your region.


The closing date for this role is Friday 2 May 2008


If you would like to have an informal discussion please contact Sandy Marshall, Projects Manager at NCIL offices.


For an application pack please contact: Karen Earl at

The National Centre for Independent Living

Fourth Floor, Hampton House

20 Albert Embankment, London SE1 7TJ

Telephone 020 7587 1663     Fax:  020 7582 2469

Minicom: 020 7587 1177

e-mail:  projectassistant@ncil.org.uk




Challenging Charges For Social Care Services

Thanks to NCIL for passing on this information.


The Coalition on Charging is a group of organisations chaired by the National Centre for Independent Living (NCIL). The coalition was established to campaign against the current system of charging for community care services.


The Coalition members include: NCIL, Age Concern, Scope, the Multiple Sclerosis Society, Disability Alliance, Alzheimer’s Society, People First, Mind, Radar, the Alliance for Inclusive Education, Counsel and Care, United Kingdom Disabled Peoples Council (UKDPC), Action for Blind People, Royal National Institute for the Deaf, Arthritis Care, British Polio Fellowship, Carers UK, Equalities, Help the Aged, the Parkinson’s Disease Society, Mencap.


The Coalition is writing an up to date report, highlighting the current situation with charging for care, to ensure that the issue is on the government’s agenda when looking at the future of social care.


Our survey:


As part of the report we want to include feedback from people who are affected by charging. We have developed a survey that will be used to help the Coalition on Charging produce good information.


The report is aimed at the Department of Health and Government. A Government consultation (‘green’) paper on reform is due out sometime in 2008.  The Government has said that it ‘believes that there are real opportunities for reform within a system that shares the cost between the individual and the state’.


However, in our view, it is very important that they look at the effects on people of the current charging system and hear the views of people who are currently being charged for their support.


In order that we can include your views please can you respond to this survey by May 1 2008.


Please fill in the question on personal details. It is important for us to know your age as adult services are often provided for ‘adults’ and ‘older people’. We will not pass on any personal information and will make all responses anonymous in the report.


The Coalition has one set of survey questions for individual people who need support and their carers. There is a separate set of survey questions for organisations representing people who need support and representing carers. Please fill in the right survey.


You can download them here:






If you are involved in a forum or network, if you were able to discuss this issue that would be very useful.


The survey is for all adults in England who use (or have used) local authority social services for support in their own home. This includes people who use (or have used) direct payments. It does not include people who use residential care services.


This survey is aimed at all disabled and older people who use community care services.


We apologise for the short amount of time given to return the survey but we hope you will be able to give us your views.


Please send your completed survey by May 1 2008 to NCIL,  Fourth Floor, Hampton House, 20 Albert Embankment, London SE1 7TJ or to policy@ncil.org.uk or fax to 0207 587 1663



Race, Disability and Human Rights

ThIs post was written by Berni Vincent.

The new Equality and Human Rights Commission was launched on October 1 2007 resulting in the merger of the Disability Rights Commission, Commission for Racial Equality and Equal Opportunities Commission.

One of the last events that the Disability Rights Commission held jointly with Equalities National Council was a conference looking at Race, Disability and Human Rights on September 12. The event from my point of view was about raising awareness, listening to others and gaining some understanding of the multi oppression that my fellow Disabled people experience.

It was good to see so many Disabled people from Black and Minority Ethnic Communities (BME) coming together to share common experiences and address ways of breaking down barriers of multi oppression and exclusion. 

BME communities are more likely to experience poverty and isolation.  For example among families that include a Disabled adult the risk of poverty is 36 per cent in white families, 52 percent in Indian families, 63 percent in Pakistani families and 83 per cent in Bangladesh families.

With regard to family members providing unpaid support; assumptions are often made that BME Disabled people’s support will be met by a close family member, with little consideration to the disempowering impact this will have on family relationships or individual family members’ right to develop their own potential and aspirations. Further more the meaning of Independent Living and the Social Model of Disability has yet to be fully understood in BME communities generally.

In a workshop led by the ‘Black Men Moving forward project’ that provides advocacy support across the Criminal Justice System, mental health service users gave personal testimony of surviving the institutional racism and neglect across the Criminal Justice system.  Disabled People generally do not have their needs met within the judicial system, and a high majority of people with mental health impairments receive no support or medical treatment. There were examples quoted of medical records not being transported to prison resulting in lack of vital medication or medical intervention at point of entry on release from the prison service.   

So what needs to happen if things are to change; the starting point has to be ensuring that public bodies grasp their responsibility to ensure BME Disabled People enjoy the same freedom, respect and equality as everyone else.  Time and investment needs to be made to adequately fund peer support organisations that can continue to lead the way offer support and influence policy design.  

The responsibility lies with us all – public bodies, service providers, and the voluntary sector. We must work together to break down barriers of isolation and mistrust and find ways to listen and understand each other issues and experiences. We must believe It is possible to break the oppressive chains that isolate multi oppressed groups in BME communities.  We need to actively work together to bring the barriers down.