-A A +A
Select color visibility that suits you Basic theme Dark theme Darker theme Text only

Strategic partner updates August 2015

10 August 2015

Health and Social Care update from our work as Strategic Partner to the Department of Health, NHS England and Public Health England

Disability Rights UK heads up a user-led consortium as one of 22 strategic partners in the voluntary sector. Our name is ‘Win-Win Alliance – disabled people leading change’. This programme is commissioned by our system partners, the Department of Health, NHS England and Public Health England.

As a strategic partner we are well placed to raise particular challenges facing our members of disabled people’s user-led organisations. We also ensure that information and opportunities to engage with system partners reach our members through this and other updates, forums, meetings and discussions, and we regularly inform about funding opportunities (which you may pursue with or without Disability Rights UK).

This month we particularly invite our members’ contributions to a new research & development project on ‘user-driven commissioning. For any comments and/or ideas about how to strengthen ‘disabled people leading change’, please get in touch with Bernd.Sass@disabilityrightsuk.org 

With some support of the Strategic Partnership Programme and an ESRC grant we want to focus on ‘what makes change happen?’ The special thing about this initiative is that it has both development and research elements – so we can help make things better and then study the impact that this is having. If we co-produce projects, can we disabled people have a positive impact on professionals and on what they are doing? How does this happen?

Maybe your DPULO is already involved with the local Clinical Commissioning Group or Adult Social Care department – say on co-producing experience and outcome measures that would be written into provider contracts to determine (to an extent) the payment of these providers. Or peer support is really about to take off from a well resourced and supported basis in your local area?

If you would like to work with us on any such projects in the future or simply showcase what you have done, please get in touch with Bernd Sass at Disability Rights UK bernd.sass@disabilityrightsuk.org . Or call him directly on 07906 521536. One of our members recently replied: "You have given me lots of food for thought. I will do some initial thinking and explore some ideas with our ILS Coordinator and with my Integrated Personal Commissioning colleagues." See also our quarterly highlights! 

Further specific news  

Public services must ‘wake up’ to gaps in mental health crisis care, CQC warns

People who are having a mental health crisis are not always receiving care and support when and where they need it, the regulator has found.

In a national report on Friday 12 June, the Care Quality Commission (CQC) has raised concerns that public services, such as local authorities, NHS trusts and clinical commissioning groups, are failing to work together to make sure that people in their local areas have access to crisis care around the clock. Also, it found that healthcare professionals, such as those in A&E, can appear to lack compassion and warmth in how to care for and speak to people who are having a crisis, including those who have harmed themselves.

As part of its review, CQC sought views from people who have experienced different types of mental health crisis care. It found that while 86% of those who had received care and support from charities and volunteers felt that their concerns had been taken seriously by them, only 37% said that they felt this from A&E staff. This is worrying as these professionals should be trained in how to care for and respond to them. In particular, people often reported poor attitudes from staff towards their injuries caused by self-harm. Overall, only 14% of people thought the care they received provided the right response and helped them to resolve their crisis.

To read more and download the report, go to: http://www.cqc.org.uk/content/new-report-looking-people%E2%80%99s-experience-care-during-mental-health-crisis 

Call for learning disabled self-advocacy groups and ULOs in the South

Disability Rights UK has been commissioned by CQC to get in touch with ULOs and self-advocacy organisations of people with learning disabilities – from September particularly in the South of England. We hope to make a meaningful contribution in talking to learning disabled people who may also be part of a ULO acting with and for disabled people across impairments. Please get in touch if you want to help with bernd.sass@disabilityrightsuk.org 

Powerful people: reinforcing the power of citizens and communities in health and care

A new report argues for giving citizens greater control over their own health and care, so that services are redesigned around their needs and aspirations.


This report may inform you about helpful policies, good practice and legal duties when engaging with local commissioners. 

Children and young people give their views and opinions on health care

Nearly 19,000 children and young people have been given the chance to provide feedback on their hospital experiences. The survey was carried out by the Care Quality Commission and will supply NHS England and the Department of Health with data to assess performance against national targets on patient experience. Nationally, 137 acute NHS trusts took part in the survey which was broken down into three age-appropriate questionnaires, specially developed to give children and young people a voice on health care.

To read more, go to: http://www.england.nhs.uk/2015/07/01/cyp-health-survey/ 

Accessible Information Standard approved

A new information standard has been approved which aims to ensure that patients with a disability or sensory loss receive accessible information and communication support.

All organisations providing NHS or adult social care will be required to follow the new Accessible Information Standard – known officially as SCCI1605 Accessible Information – by 31 July 2016. This includes NHS Trusts and GP practices. The Standard aims to ensure that people who have a disability or sensory loss receive information that they can access and understand, for example in large print, braille or via email, and professional communication support if they need it, for example from a British Sign Language interpreter.

As a result of the Accessible Information Standard (AIS), language is being ‘translated’ into other means of communication, i.e. other language. While this is a clear improvement, more needs to be done to create a more level playing field for disabled people in access to, experience and outcomes of NHS and social care services, for instance a 'right to peer support' to hear from someone who has been through a similar experience at diagnosis and crisis stages - moving beyond pure language-based adjustments.

Disability Rights UK had some input through its partner CHANGE (in the Win-Win Alliance - disabled leading change) acting as a member of the AIS Advisory Group. However, Disability Rights UK would like to point out that other ways of influencing through campaigning may have been equally instrumental. It took considerable efforts and pre-legal action for our member Dudley CIL to push for its member Graham Kirwan's right to have formal NHS letters sent to him by email. The new standard will enable Mr Kirwan to read them through his screenreader rather than having his confidentiality breached by relying on others reading his letters out to him. 

More information is available at www.england.nhs.uk/accessibleinfo or email england.nhs.participation@nhs.net

Viewpoint: reconsidering accountability in an age of integrated care
This paper examines the future of governance and accountability in the NHS and social care amid the rise of new provider models, a growing focus on integration and deep cuts in council funding.


Launch of the Cancer Taskforce strategy

The Cancer Taskforce launched its strategy this week. The strategy considers how to deliver better prevention, swifter diagnosis and improved treatment and care for all cancer patients. All of the priorities highlighted in the strategy seek, in some form, to address inequalities in cancer, to achieve a world class cancer service for everyone in England.

PHE has also just published the third National Cancer Intelligence Network (NCIN) report on cancer and equality groups. This report collates the existing data on inequality and cancer.

The Win Win Alliance – disabled people leading change had submitted learning from our own work on improving communications between disabled people/patients and professionals. Too often, misdiagnoses still happen because people are not being listened to.

Transforming services for learning disabilities - Transforming Care Delivery Board publishes progress report

The Transforming Care Delivery Board, which includes NHS England, the Local Government Association (LGA), the Association of Directors of Adult Social Services (ADASS), the Care Quality Commission (CQC), Health Education England (HEE) and the Department of Health (DH), has today published a Progress Report on their joint work programme to improve services for people with learning disabilities and/or autism, and drive system-wide change. 

The Transforming Care programme will enable more people to live in the community, with the right support, ideally close to home. 

The report is available on NHS England’s website: http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/   

Greater Manchester Devolution Agreement

On July 10 PHE, the local authorities of Greater Manchester and their partners, and NHS England have signed a memorandum of understanding to set out their collective intention to place public health at the heart of public sector reform.

The aim is to achieve the greatest possible devolution and accelerate the development of local place-based solutions that are most likely to improve health and wellbeing and close the gap between the well off and the poor.

An agreement has been affirmed to work together to secure a unified public health leadership system in Greater Manchester and to make the evidence-based case for the economics of prevention, demonstrating the links between health, employment and the outcomes of early intervention.

The Win-Win Alliance met recently with the CEO of Man-Devo as part of the Inclusion Health subgroup of the Equality and Diversity Council. We illustrated our work on user-driven commissioning (and procurement more narrowly), and we were assured that our experiences will inform wider developments in this respect. 

Progress report published on transforming care for people with learning disabilities

NHS England has set out a clear programme of work with other national partners, outlined in ‘Transforming Care – Next Steps’, to improve services for people with learning disabilities and/or autism, and drive system-wide change. This will enable more people to live in the community, with the right support, ideally close to home.

Led jointly by NHS England, the Association of Adult Social Services (ADASS), the Care Quality Commission (CQC), Local Government Association (LGA), Health Education England (HEE) and the Department of Health (DH), the Transforming Care programme focuses on the five key areas of: empowering individuals; right care, right place; workforce; regulation; and data.

The Transforming Care Delivery Board (TCDB), that brings together senior representatives from the six national partners, has published a Progress Report (also in easy read) outlining what has already been delivered on the Transforming Care programme, with important milestones for 2015/16.  The report acknowledges that while progress has been made, there is still much more to do to ensure that where it is appropriate, people are cared for in the community and close to home.

For more information, see the NHS England website:


People with learning disabilities over-prescribed psychiatric drugs

A new study by PHE finds 1 in 6 adults with a learning disability is being prescribed anti-psychotic drugs by their GP that are normally used to treat major mental illnesses. Over half of these adults do not have a recorded diagnosis of a condition they are designed to treat.

The report ‘Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England’    was completed in collaboration with researchers at the Clinical Practice Research Datalink (CPRD).

See more here: https://www.gov.uk/government/news/people-with-learning-disabilities-over-prescribed-psychiatric-drugs 

NHS E has pledged urgent action with a letter http://www.england.nhs.uk/2015/07/14/urgent-pledge/ 

Right Wheelchair, Right Time, Right Now Campaign

The Right Wheelchair, Right Time, Right Now Campaign has been launched to improve Wheelchair Services in England. The service is notoriously poor, to the extent that it is causing harm, as well as waste and delays - reports:

  • On Radio 4 on The World At One, on the 6 O’clock News and on the 10 O’clock News
  • Interviews on Radio 5Live
  • Articles on the BBC website (http://www.bbc.co.uk/news/uk-33595627)  in the Guardian and elsewhere.

Now the Wheelchair Leadership Alliance needs as many people as possible to visit www.rightwheelchair.org.uk and:

  • Pledge support for the campaign to improve Wheelchair services
  • Use the 'Resources' there to write to their local MP and Clinical Commissioning Group (there are links inside the letter templates that will help you identify these people).

Please spread this through your networks, and ask your colleagues and friends to pledge.

The WWA is supporting the Wheelchair Leadership Alliance over the coming months in the co-production of some experience and outcome measures that can (translated into metrics) be written into provider contracts. 

Role of Advice Services in Health Outcomes report

The Low Commission has worked in partnership with the Advice Services Alliance to produce a new report on The Role of Advice Services in Health Outcomes.  Both the Age UK national office and local partners have provided input for the report which looks at the relationship between advice needs and services, and health. Until now the linkage between social welfare advice improving health outcomes within the context of the "social determinants" (reference - the Marmot Review Report) of ill-health has not been widely mainstreamed amongst policy makers and commissioners.

The production of the report was guided by group of experts from health and advice charities, including Age UK.

To read the report, go to: http://www.lowcommission.org.uk/dyn/1435582011755/ASA-report_Web.pdf

Seeking feedback on effective engagement with the community and voluntary sector in EDS2 implementation
Race Equality Foundation, in partnership with LGBT Foundation, Disability Rights UK and Mens Health Forum, have been funded by NHS England to produce a best practice guide for engaging with the community and voluntary sector in the implementation of the latest version of the Equality and Diversity System (EDS2).

To develop the guide, we consulted with organisations to share good practice examples of working to effectively implement EDS2. These consultations took place through an online survey and a number of workshops with service-users, people from the voluntary and community sector, Clinical Commission Groups, Foundation Trusts, Healthwatch England, CQCs and NHS Employers. 

The discussions and examples shared in the survey and at the workshops will contribute to producing a guide that is evidence-based and practical. These examples are currently being assessed and developed into case studies for inclusion in the guide, and will help us to further develop criteria for assessing good practice. 

We are still seeking examples of good practice through the survey . Please do share it on to any other interested parties.

Mental health crisis review – experiences of black and minority ethnic communities
Research over a number of decades has shown black and minority ethnic people are over-represented in crisis mental health services. The Race Equality Foundation was commissioned by the Care Quality Commission (CQC) to conduct a series of interviews and focus groups with black and minority ethnic people, in specific areas, who had experience of crisis care. This report summarises the findings of the research. 

Hempsons' Trustee Training Workshops

These free trustee training workshops will be of interest to all charity trustees seeking to understand their charity’s governance and their role. The sessions have also proved useful for Chief Executives and others in charities who are looking for clarity on the different functions of trustees and senior management teams and the potential problems where trustees become too closely involved in operational matters.

Setting the scene with the Charity Commission’s current regulatory approach and their recent guidance “It’s your decision”, we will explore the need for trustees to take responsibility for their decisions.

Each session will cover the legal duties and responsibilities of charity trustees, looking at Board effectiveness, conflicts of interest, decision-making, minute taking and delegation to Chief Executives and committees. Our aim is to give practical tips to help improve your governance.

The sessions will be presented by Ian Hempseed, Head of Charities and Social Enterprise and Simon Lee, an Associate in Hempsons Charities and Social Enterprise team. Richard Weaver, Head of Charities and Not for Profit at haysmacintyre (specialist charity accountants) will take you through trustees’ responsibilities for both external and internal financial reporting. He will examine key areas such as the different types of funds and how they can be spent and the linking of reserves policy to strategy. Timings for the sessions are displayed below.

Morning session:

09:45am: Registration

10:00am: Start

12:00pm: Close

Afternoon session:

13:45pm: Registration

14:00pm: Start

16:00pm: Close

When registering for this event, please specify whether you would like to attend the morning or the afternoon session. If you have any questions, please contact Bianca Pascal at events@hempsons.co.uk

To register for one of the event, click here: http://hempsons.cmail1.com/t/r-l-ahddrly-driikytjul-n/ 

Ensure you select whether you wish to attend the morning or afternoon session.

Morning sessions:

London, 16 September 2015

Newcastle, 17 September 2015

Manchester, 23 September 2015

Harrogate, 30 September 2015 

Afternoon sessions:

London, 16 September 2015

Newcastle, 17 September 2015

Manchester, 23 September 2015

Harrogate, 30 September 2015 

Locations :

Hempsons London

Hempsons Harrogate

Hempsons Newcastle

Hempsons Manchester