Month: March 2017

VCSE Health and Wellbeing Programme

The Neurological Alliance has submitted a bid to join the VCSE Health and Wellbeing Alliance.

The bid was submitted jointly with the Neurological Alliance pan neurology member, Sue Ryder. This is a new programme to enable the Department of Health, NHS England and Public Health England to work together with voluntary, community and social enterprise organisations to “drive transformation of health and care systems to promote equality and address health inequalities and help people, families and communities to achieve and maintain wellbeing.” The outcome will be reported at end of March.

State of Caring Survey 2016

Carers UK

Based on findings from Carers UK, State of Caring Survey 2016, ‘Missing out: The identification challenge’ research project explores the time it takes for people to recognise they have taken on a caring role, and whether they had missed out on support because they simply didn’t think of themselves as a carer.

Notice of May meeting – AGM

Our May meeting will include our AGM and we hope as many members as possible will be able to attend. We run entirely on the good will of people with an interest in neurological conditions and meet 8-10 times a year, mostly open meetings with speakers.

The AGM meeting will include 

  • Confirmation of minutes of the AGM 2016
  • Chair’s annual report
  • Accounts 2016-2017
  • Formation of committee for 2017-18

If you are interested in joining the committee please either email or complete the attached form




Continuing to care report

This report was written by Parkinson’s UK in association with the Continuing Healthcare Alliance.

It looks into the current state of NHS continuing healthcare in England and whether it’s supporting the people who need it most.

We believe that it isn’t, and we want you to share the report with your local decision makers to improve the system.

Download the report

Continuing to care report front cover

Download the Continuing to Care report (PDF, 3MB)


Royal Pharmaceutical Society (RPS)

The RPS promotes the expertise and clinical knowledge of pharmacists to support people with long term conditions and help them achieve the desired outcomes from their medicines, thereby making more efficient use of National Health Service (NHS) resources.

A new report takes a principle based approach to the management of long term conditions. Focussing on the need to enhance the role of pharmacists as part of a multidisciplinary approach, the report takes into account the main objectives of NHS England’s Five Year Forward View.

The RPS proposes that optimal use of pharmacists can support people with long term conditions to:

  •  Improve health by maximising pharmacists’ role in health and wellbeing 
  • Transform care by utilising pharmacists’ skills, expertise and knowledge in medicines and their holistic approach to patient care 
  • Help to control costs by reducing medicines waste and unplanned admissions to hospital by better use of medicines
  • See the report at

Independent Living Strategy Group looking for local authority assessment case studies

The Independent Living Strategy Group (chaired by Baroness Jane Campbell) is seeking information about cases where an individual has been in dispute with their local authority concerning assessment and/or support provided under the Care Act, and where the local authority has climbed down following a threat of legal action. Please email any information to Jenny Morris,

If you have any queries about this please also email Jenny.


Taking Charge – a new book

Via Disability Rights UK  Taking Charge Price: £13.99

A practical guide to living with a disability or health condition

  • Do you want to live the life you choose?
  • Do you want to find out how to do this?
  • Do you want to read about people in the same or similar situations?

If you have a physical or mental health condition, have just been given a life-changing diagnosis or your health is starting to worsen in later life. ‘Taking Charge’ is the publication for you.

There is no other existing publication that pulls together in one place your ‘rights’ to a decent life, with choice and control – giving information on ‘what you have a right to expect’ from services, education and employment. The guide is intended to complement our ever popular Disability Rights Handbook.

About the guide

The first part of the book deals with planning and managing your life, for instance after an accident or diagnosis, or as life changes.
Then each section deals with an area of life:

  • Personal health and social care
  • Technology and equipment
  • At home
  • Your family
  • Getting around: travel and mobility
  • Leisure, sport, community activities
  • Learning, working, contributing


Download our publications flyer to order offline

Get Out Get Active

Get Out Get Active

Get Out Get Active (GOGA) is an exciting new programme that supports disabled and non-disabled people to enjoy being active together.


It focuses on getting some of the UK’s least active people moving more through fun and inclusive activities in their local communities.

Delivered by the English Federation of Disability Sport (EFDS) and their partners and funded by Spirit of 2012, it runs for over three years (2016-2019) within 18 localities (areas) across the UK, Northern Ireland, Wales and Scotland. Disability Rights UK is a National Partner.

As part of GOGA, Disability Rights UK is running a Peer Support project working with Disabled People’s Organisations and local sport and fitness organisations and providers to get people moving and enjoying fun activity- not just sport. Peer Support is about someone using their lived experience of overcoming barriers to support someone else who might be experiencing similar barriers. It takes many forms but is usually one to one and informal. The benefits of using peer support to be more active can be life changing. From boosting confidence to becoming healthier and improving mental wellbeing.

What is peer support and mentoring?

What helps to make activities more appealing and accessible?

Read more about our partners

Find out more

Questions? Or to register your interest contact Kate Pieroudis (Peer Support Lead) at Disability Rights UK on 0207 250 8111 or