Reporting from the NICE Voluntary & Community Sector Forum

 Written by Karen George, Trustee, Thyroid Trust

In September the Thyroid Trust were approached by NICE (the National Institute for Health and Care Excellence) with an invitation to attend a new Voluntary and Community Sector (VCS) Forum being established by NICE. The inaugural meeting took place on 19th October and I attended on behalf of the Thyroid Trust.

The forum was led by NICE’s CEO, Sam Roberts, supported by Jenna Dilkes, Associate Director within the NICE Centre for Health Technology Evaluation, and Victoria Thomas, head of the public involvement team. Over 70 charities and patient organisations were in attendance, from a diverse range of organisations across the voluntary and community sector. The meeting explored:

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• ​NICE’s vision for the future, priorities and transformation plus a Q&A session with NICE’s CEO 
• Breakout discussions on NICE’s vision for the future and what this might mean for the VCS
• Q&A on the Proportionate Approach to Technology Assessment (PATT) with Jenna Dilkes, Associate Director within the NICE Centre for Health Technology Evaluation  

In her presentation NICE CEO, Sam Roberts, acknowledged that NICE guidelines take too long to update - they want to develop products that talk directly to patients and carers and establish a different model for engaging on guidelines in future. NICE plans to develop digital living guidelines and introduce a proportionate approach to technical appraisals. 
 
The group was then split into separate break-out sessions and we were asked to consider 3 questions:

1. What is your reaction to Sam’s vision for the future of NICE?

The strategy and vision were generally well received, with it being seen as positive and ambitious. However, there were concerns about implementation and the possibility that there could be a disconnect between ambition and what is achieved. Many forum members were interested in how NICE would manage the high volume of requests and suggestions from VCS members.

Some felt the strategy was too broad and could leave some groups feeling excluded and disengaged. This might be because these VCS groups represent specific population groups or rarer conditions which might not be covered by NICE’s guidance. There was concern about what happens to the conditions or population groups that have no treatments (so no appraisals) and where the population or condition will not be prioritised for a guideline.

The proposal for greater inclusion of real-world evidence (RWE) in developing NICE guidelines was received positively - but tempered by concerns as to how it would be regarded when compared with peer reviewed published evidence. Perhaps this type of evidence might not be considered or have the same weight? And what if Real World Evidence (RWE) contradicted published evidence? What about rarer conditions where the evidence may not even exist - how are patients then able to make decisions about their care? There was recognition that things have improved as evidence submitted from patient organisations has been considered and acknowledged in medicine committee meetings - although this does not seem to happen in guidelines.   

2. What do you think the implications are for the voluntary and community sector?

Many of the organisations attending the forum - like the Thyroid Trust - are very small with limited resources. Responding to NICE consultations can be resource intensive and there were concerns as to how small charities - like ours - can get help to overcome these challenges.

All welcomed the opportunity to share visions and best practice as well as recommend improvement to NICE regarding their communication and processes. 
There was overwhelming agreement that the voice of VCS members is absolutely vital for communicating patient experience which might otherwise not be heard or understood by NICE.
 3. How can the forum support plans for the future of NICE, and how can NICE support forum members with this?

• The organisations making up the forum are able to support NICEs vision by contributing lived experience of patients, treatments and NICE processes – all were in agreement as to the importance of greater inclusion of case studies in the development of guidelines and evaluations. There was also a call for NICE to adopt a more flexible approach with the possibility of grouping guidance to help people with multiple conditions;
• There was a call for more VCS-friendly communication around guidance publication to help with implementation including patient friendly versions showing how patients were included in developing the guidance; 
• There was a better understanding from NICE and VCS organisations about how they can best work together, eg by providing case studies or examples of what has worked well for particular conditions and organisations; 
• VCS forum could help with quality assuring guidelines for rare conditions;
• Here at the Thyroid Trust we are very aware that the NICE guidelines for thyroid disease are not always followed or implemented as they should be and there can be a lack of consistency across the country. As such Karen asked how NICE ensures that guidelines and guidance are being implemented? NICE agreed that the patient groups can play a part in helping NICE to have visibility on this;  
• NICE and VCS forum have an opportunity to work together on integrated care systems;
• VCS forum members hold a wealth of knowledge and ‘evidence’ about the accessibility requirement of the communities they support which can be shared with NICE; 
• Forum members were keen to attend further sessions, with the opportunity to consult colleagues and patient groups before feeding back to NICE. 

 
What happens next?

NICE staff took away a commitment to share feedback from the VCS forum with the appropriate teams within NICE – starting with the team responsible for NICE’s transformation work.

The next forum meeting will take place on Thursday 26th January 2023 and the Thyroid Trust will, once again, be in attendance so look out for further updates.​