Peer Support Forums and the NHS

The management team are working with a doctor to identify what barriers there are with regard to the NHS referring people to forums like ours.
We have been asked to develop a document that brings together the key points.

We would be pleased if you would have a look at this and put your comments in the Featured Post on Facebook.

Peer Support Forums

From the perspective of the Bowel Cancer Support Group UK

What do we perceive as the NHS barriers to the use of peer support forums?

Poor understanding the needs

  • Beyond clinical treatment and advicewhat else do they need?
  • Won’t a pile of leaflets do the job?
  • Don’t Macmillan do this anyway?

Unknown quantity

  • Often lack of knowledge of the role and engagement with support forums generally
  • Lack of knowledge of online support forums
  • NHS traditionally poor patient engagement with the internet

Perceived Dangers

  • People coming with ‘online’ diagnosis
  • Potentially poor or dangerous advice
  • Medical advice being given by untrained people

What are the Support Forums barriers to becoming trusted by the NHS?

  1. Convincing the NHS there is a need for peer support groups
  2. Understanding the Gap – between clinical advice and day-to-day living with the condition/treatment
  3. Proof that forums help improve outcomes
  4. Proof they are effective at making things better
  5. Proof they don’t make things worse

What our support group does:

  • The Gap:  Addressing the gap between clinical treatment and lived experience of the condition.
  • Empowering members.
  • Lifestyle: help, information and advice on non-clinical elements of living with cancer/treatment  (food, exercise, sleep, etc).
  • Education: Cancer support is a set of skills that we will all need.
  • Emotional Support: Timely support before, during and after treatment.
  • Mental Health: Advising people to seek professional help.
  • Timely Response:  24 hour operations.
  • Anxiety: A major part of our activity is helping to reduce anxiety.  Usually through simply providing information or explanations.
  • Advice on how to cope with post-treatment side-effects.
  • Signposting clinical information.
  • Signposting to other areas/groups for specialist support – e.g. Stoma, LARS.
  • Signposting to services: IAPT, PreHab, Rehab.
  • Diagnosis analysis: Helping decode the patient notes – eg staging, KRAS.
  • Diagnosis issues: Helping people to get appropriate diagnosis – how to create a symptoms diary.
  • Cultural Issues: Helping members to support their family where cultural taboos may restrict the ability reach information in other ways.
  • Chemotherapy support: Advice on how to record your chemotherapy side-effects and feed back to the oncologist.
  • Regional Gaps: Helping members access services not available in their region.
  • Patient Advocacy:  Using the combined knowledge of the membership to help people access information about treatments and trials.
  • Leveling Up: highlighting the cost of medication in different parts of the country
  • Patient Confidence: To know what kind of questions to ask and being confident to ask them.
  • Practical advice pre-op:  What to take into hospital?
  • Spotting danger signals and advising members to seek professional advice, or even going to A&E.

What Peer Support Forums would like in order to improve their effectiveness?

  • A good set of industry standard guidelines
  • Training for management and admin
  • Training for members (cancer support, emotional support)
  • Dialogue with clinicians
  • Awareness amongst potential members
  • Escalation routes for emergency
  • Escalation routes for system issues within the NHS
  • National forum to learn from each other
  • Membership Surveys/Auditing to help help us improve 

What are the opportunities for Peer Support Forums and the NHS?

  • Improved outcomes for the patients.
  • Reduced costs for the NHS (people look after themselves better, spotting issues earlier, less time addressing issues that can be dealt with by the support group)
  • Reducing pressure on psychological services.
  • Addressing the issues that a health service cannot.
  • Untapped resource: People who have received treatment often want to be able to give back.
  • Leveling up: national forums provide the same level of support across the country.