Symptom Management Service in Aneurin Bevan UHB

 

The Aneurin Bevan University Health Board (ABUHB) provides services to Torfaen, Caerphilly, Newport, Blaenau Gwent and Monmouthshire.

Since April 2025 they have been offering a full-blown Symptom Management service for people with ME/CFS, long COVID, Fibromyalgia and other post-viral illnesses.

This is what they have told WAMES about the service:

Who?

“The Symptom Management service will support people and their family/carers at all ages and all stages of their condition to understand and manage symptoms that they may be experiencing” – both adults and children from mild to very severe. The adult service is open to people over 16.

ABUHB’s view of  ME/CFS?

The Recovering from Illness paediatric service webpages tells Education providers about common symptoms young patients experience but does not include the key characteristic of ME/CFS: Post Exertional Malaise/ Post Exertional Symptom Exacerbation PEM/PESE). Instead they say that energy batteries reduce in size when ill or in pain, and if children rest too much they may become deconditioned and exerience ‘boom and bust’.

This contradicts the NICE guideline 1.2 which says that all 4 symptoms (PEM, debilitating fatigue, cognitive difficulties and unrefreshing sleep/sleep disturbance are found in children, as well as adults, and needs careful management. Deconditioning is not an inevitable part of ME/CFS.

The Symptom Management Service web pages for adults define ME/CFS as “an energy-limiting, long-term condition characterised by a range of symptoms, with one of the main characteristics being post-exertional malaise  or PEM, which is “a worsening of all symptoms which can be triggered immediately by any form of exertion (physical, emotional, cognitive or sensory) or may be delayed by an onset of 24-72 hours.”

Referral?

The Services accept referrals from any health care professional, and people can also self-refer by form, telepone or email, receiving help to complete the process, if necessary.

Self-Referral forms  03330 415379    Abb.symptommanagementservice@wales.nhs.uk

ME/CFS is “an energy-limiting, long-term condition” 

Time limit?

No. People can access the service as and when they need via self-referral forms so is centred around the person’s needs.

Who staffs the Services?

Consultant (Infectious Diseases)
Paediatrician
Occupational Therapists
Physiotherapists
Psychologists
Exercise Professionals including National Exercise on Referral (NERS)

What happens once my application is accepted?

The Adult Service does not diagnose, confirm diagnoses or take on medical management of participants, but they ‘support and navigate on-going medical support with other services within the organisation to ensure appropriate care is provided.’

You can choose to have an assessment at any point, or simply use the information on the webpages, and attend conditions and/or management sessions.  There is a one and a half hour introduction to ME/CFS.

The service is designed to:

• help people understand the process of diagnosis for symptoms and where they can access it
• help people manage symptoms so their impact is reduced, even if it is not possible for symptoms to resolve completely
• help identify options for accessing support to help their symptoms and conditions
• help people with more complex needs access the specialist MDT service for individual assessments with one or more member of the team

Children and young people are given a clinic appointment where the young person and their family meet with the team and discuss the challenges the young person is facing and how this is affecting their life. The young person and their family take home a bespoke intervention plan developed together by the team and the family. That may include:

• face to face or virtual groups: Living with a health condition; Energy management strategies
• 1:1 intervention including: psychology, physiotherapy and occupational therapy
• further medical investigations if needed
• signposting to other services which can offer additional support
• sharing advice to help the family in feeling confident to support the young person in their own home.
• liaison with schools e.g., ALNCOs to ensure that the child and young person is supported in every aspect of their life.

Help with personalised care and support plan?

“We can work with people to support development of individualised plans both in terms of their path through our services and in terms of energy management, managing setbacks and relapses, managing stress and wellbeing and coping with brain fog.

This includes family/carers as appropriate for the individual and family/carers as individuals themselves.

We work to NICE 1.5.2 guidelines but do not prescribe medicines as we are a non-medical model and are therapies led.”

Which symptom & lifestyle  monitoring tools are used? 

The Service will work with people to utilise any tools they feel comfortable with to self-assess the development of symptoms and function; this will vary dependent on individual capacity and affordability. [FUNCAP, DePaul Symptom Questionnaire (DSQ),  EQ5D5L, Visible app etc.]

Which energy management tools are supported?

The services use activity logs and self-assessment sheets.

Service development?

The Symptom Management Service invites service users and others in the ME community to help improve services.

Community Co-Production Group – meets 3rd Thurs of the month online via Teams

More information

Symptom management service website

WAMES welcomes the ABUHB Symptom Management Service’s decision to offer support to people of all ages and levels of severity, with the much-needed option of referring themselves into the service.  The Adult Team met with WAMES a number of times to learn from our experience and we are delighted they have set up a regular Co-production Group to continue listening to users and prospective users!

We encourage the Paediatric Service to update the information about ME/CFS on their website and ensure the support they offer is evidence based and meets the needs of patients and their families.

NB The Symptom Management Service website provides a wide range of information and links to services for a variety of medical conditions. Be aware that not all of it is relevant for people with ME/CFS and PEM/PESE. Proceed with care!