Share your views to help improve public information about NHS Continuing Healthcare

Posted on: September 5th, 2018 by Amy

Evolving Communities -Inform, Influence, Improve / Beacon - Leading you through the maze of continuing healthcare

Evolving Communities CIC in collaboration with Beacon have an exciting opportunity for individuals to improve the quality and accessibility of NHS Continuing Healthcare (CHC) information.

We want to hear from you if you are an individual or their representative and have gone through the CHC assessment process (Checklist and/or full assessment). We’re interested in how you accessed information about CHC throughout the entire process.

This work is being commissioned by NHS England (NHSE) and will help them develop a national CHC information resource.

The project has two stages, an online survey and a series of focus groups across England.

1. An online survey that will take no more than 10 minutes to complete. This is open to anyone who has experience of any part of the referral and assessment process.
2. Four focus groups taking place in mid-late September in Birmingham, Leeds, London and Bristol. Participants must have experience of the full assessment process.

The survey:

We invite anyone who has experience of being assessed for CHC, or representing another person who was being assessed, to complete a 10-minute online survey. It aims to gather insights into the quantity, quality and accessibility of CHC information – and whether this varies across the country and according to care needs.

It will collect some details about you/the person you represent and ask for your views on the information, or lack of it, that you received throughout the CHC process. For example:

  • How easy was it to find information at each stage?
  • Did you receive too much/not enough information?
  • Was it easy to read and understand?
  • What was your decision letter like?
  • Did it tell you how the eligibility criteria were applied?
  • What type of information would have been useful?

The survey is anonymous, so you do not need to provide your name. You only need to complete the questions that you feel comfortable to answer.

You can take part in the online survey until 30 September 2018 by clicking this link:


The Focus Groups:

The focus groups will explore in more detail the topics that come from responses to the survey. We invite you to apply to take part if you are an individual/their representative who has gone through the full assessment process (multidisciplinary assessment/Decision Support Tool).

The focus groups will last about 90 minutes and will take place at the following dates and locations:

19 September in London (APPLICATIONS NOW CLOSED)
20 September in Bristol (APPLICATIONS NOW CLOSED)
26 September in Birmingham
27 September in Leeds

Travel expenses will be reimbursed to a maximum specified value, and refreshments will be provided. Each focus group will consist of a maximum of 10-12 people, and everyone will have the opportunity to share their views. We will ask you to bring along some examples of the information that you received about CHC, if possible.

If you meet the above criteria and are interested in taking part in a focus group, please email to express your interest and include the following information:

• Your name • Your contact telephone number • The location you are interested in attending • Whether your experience of information provision was broadly good or bad • Your/the person being assessed’s location at the time of the assessment • A brief paragraph explaining your experience of being assessed/having a loved one assessed for CHC.


Full details of the event will follow if you are selected.

Thank you so much and we look forward to hearing from you.


How we will use your information

The Research Team at Evolving Communities will gather all the information together and along with Beacon, will write a report that summarises what people across the country have told us. This will be presented to NHS England and will feed into their work around information provision.

All the information that you provide to us will be anonymised. We won’t use your name or identify you in any way unless you have given us express consent for us to use your story as a case study/story. All the information we collect is processed in accordance with the Data Protection Act 1998 (2018) and the General Data Protection Regulation 2018. A full copy of Evolving Communities’ privacy statement can be accessed by visiting the website: A full copy of Beacon’s privacy statement can be accessed by visiting the website: The data collected from the survey will be shared anonymously with NHS England so that it can be used in future work around CHC. No personal contact details will be shared with NHS England.

Evolving Communities provides a professional consultancy service specialising in research, evaluation and public engagement.  We help local people and organisations shape the way health and care services  are run in their communities.  We are an independent community interest company which also supports the work of several Healthwatch organisations in the South West.  For more information you can visit our website:

Beacon is an information, advice and advocacy organisation whose sole aim is to support individuals and their families to understand and navigate the NHS continuing healthcare assessment, appeal and care planning pathways.  We are a social enterprise offering a range of free and paid for services including up to 90 minutes of NHS England-funded independent advice and a full range of low cost advocacy services.  For more information you can visit our website:

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