Health services for ME in Wales – a 20 year WAMES update

Health services for ME in Wales – a WAMES update

 

WAMES in Wales

It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services.  Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.

That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?

Welsh Government & ME

  • Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
  • In 2004 a series of Masterclasses were planned around the country.  The interest shown by GPs was so low, only one took place.
  • In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
  • WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
  • The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
  • In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
  • In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.

Has healthcare for ME improved?

It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.

WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.

The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.

Why is progress so slow?

There are many possible reasons contributing to this:

  • Continuing reorganisation and financial difficulties in Health Boards
  • Constantly changing personnel in HBs and Welsh Government
  • Lack of a clinical champion for Wales
  • No funding from the Welsh Government
  • Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
  • No obligation for HBs to implement improvements
  • Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
  • An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
  • A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.

WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose.   Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.

What next?

The All Wales Implementation Group (AWIG) has a new government policy lead.

Current work priorities are:

  • Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
  • Redesigning a clinical pathway
  • Developing patient information sheets
    Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)

WAMES will:

  • continue to represent people with ME on AWiG
  • continue to explore awareness raising possibilities with the RCGP;
  • work with the NHS in devising an ME self-management programme
  • represent Welsh people with ME on the NICE guideline review
  • take every opportunity to raise awareness of neurological ME in NHS Wales

Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales  jan@wames.org.uk

 

Posted in News | Tagged , , | Comments Off on Health services for ME in Wales – a 20 year WAMES update

Video lecture by Dr Lucinda Bateman: Upright activity & exercise intolerance: critical concepts in the evaluation of chronic fatigue

Upright activity and exercise intolerance: critical concepts in the evaluation of chronic fatigue, by Dr Lucinda Bateman

 

Dr Bateman talks to doctors.  Duration 56 minutes.

Topics covered:

  • how she assesses and diagnoses patients with ME/CFS
  • the questionnaires she gets them to fill in before they see her include the whole of the SF-36 (Rand-36) questionnaire, not just physical function, the fibromyalgia impact questionnaire, questions about hours of upright activity (feet on floor) on good and bad days
  • Post exertional malaise – what it is, and some research relating to it
  • the importance of staying within the energy envelope and some research that showed that those patients who successfully managed their activity to stay within their envelope stabilised and gradually improved over time, and those who didn’t got worse.
  • orthostatic intolerance including 10 minute stand test and pulse, blood pressure and pulse pressure changes.
  • cognitive problems

Dr Lucinda Bateman has run a clinic for patients with ME/CFS and Fibromyalgia in Utah, USA since 2000: Bateman Horne Center

Posted in News | Tagged , , , , | Leave a comment

EPP self-management courses in North Wales 2020

Chronic Disease Self Management Programme

The CDSMP is an EPP Cymru course to help people who live with a long term health condition to maintain and improve their quality of life through self-management.

What does the course involve?

Six weekly sessions, each lasting two and a half hours (including breaks and refreshments). They are very varied. There are brief talks, discussions and freethinking sessions.

The course is about learning important general skills, not specific to any one condition, including:

  • managing your symptoms
  • dealing with stress
  • depression and low self-image
  • managing pain
  • developing coping skills
  • learning ways to relax and eating healthily
  • working more closely with those caring for you
  • planning for the future.

Book your place in advance – some courses can fill up quickly 

To book a place on one of the above courses, please contact the Self Care Office:

More information about Health & Well being courses from the Betsi Cadwaladr University Health Board website  or EPP Cymru.

NB  Some people with ME may find this course helpful, others might not. Please check the details carefully to make sure it is suitable for you and you are well enough to cope.

Posted in News | Tagged , , , , , | Leave a comment

EPP Health & well-being courses Newport, Jan – Jun 2020

EPP Health & well-being courses in Newport 2020

Early booking is advised as many 2020 courses are already fully booked.

 

Living with Chronic Pain

  • Start date: 10 January 2020
  • Venue: Newport Gavo, Ty Derwen
  • 6 week Course:  Friday 12.30 pm – 3 pm

 

Living with Long Term Conditions

  • Start date: 27 March 2020
  • Venue: Newport Salvation Army
  • 6 Weeks Course: Thursday 10 am – 12.30 pm

Living with Chronic Pain

  • Start date: 10 June 2020
  • Venue: Newport Salvation Army
  • 6 week Course: Wednesday   10 am – 12.30pm

To book a place on one of these FREE courses or for more information about courses in your area, please contact:

Jules Godden,   EPP Co-ordinator    01633 247674     jules.horton@gavowales.org.uk

Gwent Association of Voluntary Organisations, Ty Derwen, Church Road Newport NP19 7EJ

@EPPCymru  Follow on Facebook – regularly updated with new course dates

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope.

Posted in News | Tagged , , , | Leave a comment

EPP self-care courses for carers, Llandudno & Wrexham Jan-Feb 2020

Caring for Me and You

A course to help people who care for someone with a long term health condition to maintain and improve their quality of life through self-management.

The course covers topics such as staying healthy, getting help, challenging behaviours, improving fatigue and relaxation.

To find out more, suggest a venue for future courses or to book a place in advance, contact:

BCU Self Care Office   03000 852280             03000 852281

Fax : – 03000 852282        EPPCymru.BCUHB@wales.nhs.uk

Posted in News | Tagged , , , , | Leave a comment

Stress management course begins Swansea 14 Nov 2019

The Stress Control course

The Stress Control course helps people to understand how stress and associated problems such as low mood, anxiety, panic and sleep affect them. The aim of the course is to help turn you into your own therapist; you are the expert on you, but the course is here to guide you in improving your understanding and management of stress.

The course is based on Cognitive Behavioural Therapy which looks at the connection between thoughts, feelings, bodily sensations and behaviours to help people discover what may be maintaining their stress and learn ways to manage it more effectively.

The course is run weekly over six sessions for approximately 90 minutes with a break halfway through the session.

The six sessions:

  1. What is stress? The first steps
  2. Controlling your body
  3. Controlling your thoughts
  4. Controlling your actions
  5. Controlling panic feelings and medication
  6. Controlling your sleep, wellbeing and controlling your future

Swansea

  • Swansea YMCA, 1 The Kingsway, Swansea SA1 5JQ
  • Room: Theatre
  • Thurs 14th Nov – 19th December  2019    2-3.30 pm

You can turn up and register on the day of the course and bring a friend. Free course materials and relaxation CD will be available.

Stress Control is run as part of the Abertawe Bro Morgannwg Health Board Living Life Well Programme.

For more information contact the team: 07967 612246  living.lifewell@wales.nhs.uk

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope.

Posted in News | Tagged , , , , | Leave a comment

Stress management courses begin Newport 13 & 20 Nov 2019

Stress control course

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Newport

  • Wed 13th Nov – 18th Dec 2019, 6-8 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

Newport

  • Wed 20th Nov – 8th Jan 2019, 1 – 2.45 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope

Posted in News | Tagged , , , , , | Leave a comment

Rethinking the standard of care for ME/CFS

Rethinking the standard of care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Fred Friedberg, Madison Sunnquist, Luis Nacul in Journal of General Internal Medicine, Published online: 21 October 2019 [doi.org/10.1007/s11606-019-05375-y ]

 

Article abstract:

For over two decades, the standard of care for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been cognitive behavior therapy (CBT) and graded exercise therapy (GET). Both interventions had been recommended by the US Centers for Disease Control and the UK NICE guidelines.1

Behavioral intervention as the clinical standard was given a considerable boost by the 5 million–pound PACE trial, a large multi-arm randomized trial of CBT and GET launched in 2007.2 This British government–funded trial was intended to definitively answer whether such interventions were beneficial in ME/CFS. In their 2011 and 2013 publications, the PACE trial authors announced with widespread publicity that 22% of their patients had “recovered” and 59–61% had clinically improved across the CBT and GET interventions.2, 3

More generally, multiple literature reviews have reported that these therapies are not only effective at improving fatigue and, to a lesser extent, physical function in ME/CFS but also safe.4, 5, 6 It would seem obvious then that good clinical care of these patients would include these behavioral interventions. But, a closer look at these trials has generated many concerns about their applicability to these patients. This perspective critically examines their findings and more generally discusses the behavioral intervention literature in ME/CFS. Finally, we briefly describe a pragmatic clinical approach for these often-marginalized patients.

CARING FOR ME/CFS PATIENTS

In clinical practice, many individuals presenting with the common symptom of persistent fatigue may benefit from activity-based behavioral interventions, e.g., Friedberg et al.26 However, persistent fatigue is not equivalent to the multi-symptom debilitating illness of ME/CFS. Despite the lack of approved treatments or a fully articulated standard of medical care, there are still many actions physicians can take to help these underserved patients. First, practitioners can acknowledge the biomedical reality of the illness and their belief that the patient is genuinely ill. Next, clinicians can help patients to better manage a major illness challenge: how to minimize debilitating post-exertional malaise by learning to stay within their energy envelope.36

The energy envelope delineates the amount of energy that a ME/CFS patient has available to perform all activities.37 The size of this energy envelope can vary from day to day and between patients with some patients lacking energy for basic activities of daily living. When patients exceed their limited energy levels, they experience post-exertional worsening of symptoms and functioning. Medical providers can teach patients how to recognize their own personal energy limits and use pacing (dividing symptom-producing activities into smaller parts with interspersed rest intervals) to stay within those limits.34, 37 Once pacing is effectively used, some patients may be able to use an individualized exercise plan to increase available energy and functioning while avoiding post-exertional worsening.34, 36

Practitioners can also help patients with appropriate pharmacological and non-pharmacological treatments.38, 39 This includes treatments for unrefreshing sleep, e.g., trazodone and low-dose tricyclic antidepressants, and sleep hygiene measures.

In addition, pain can be addressed with low-dose naltrexone40 and anti-epileptics, e.g., gabapentin, and orthostatic intolerance can be treated with fludrocortisone and salt loading. Comorbidities can be managed using standard of care. Drugs should usually be started at low doses because patients can be sensitive to medications. If needed, patients can be referred to counseling to improve coping with the severe impacts of ME/CFS on quality of life.

For optimal patient care, we recommend a ME/CFS specialist or a specialist center supported by a multi-disciplinary team. Unfortunately, few of these practitioners or centers are available, which highlights the need for provider education and training regarding this illness. Realistically, when specialists are not available, care is best provided by the generalist (internal medicine or family doctor) working as part of a multidisciplinary team including expertise (as available) in immunology, infectious disease, cardiology or neurology, psychology, occupational therapy, and social work. With this interprofessional approach, practitioners can lessen harms while helping patients improve their health, function, and quality of life to the extent possible.

Further information on clinical management may be found in the following sources: a free practitioner’s guide to ME/CFS,34 a clinically focused review, 41 and a pragmatic clinical paper.36

Posted in News | Tagged , , , , , , , , , , , | Leave a comment

Stress management course begins Chepstow 12 Nov 2019

Stress control course

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Chepstow

  • Tues 12th Nov – 17 Dec 2019, 5.30 – 7.30 pm
  • Venue: Chepstow Fire Station, Regent House, Mounton Road, Regent Way, Chepstow, NP16 5BY

All courses  are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend

Posted in News | Tagged , , , , , | Leave a comment

New research initiative: ME/CFS Biomedical Partnership

ME/CFS Biomedical Partnership: Genetics and Biomarkers

Prof Chris Ponting

This is the working title for a partnership of researchers, including Professor Chris Ponting of the UK CMRC, and Dr Luis Nacul of the Cure ME UK ME/CFS Biobank (UKMEB) team and ME/CFS patients, carers and public.

Early in 2020, the partnership will make a grant application to the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) for a very large genetic study, a genome-wide association study, and a major expansion of the UKMEB.

The Medical Research Council (MRC) will fund a workshop later this month (November 2019) to help the Partnership explore how to make its application as robust as possible.

The plan:

  • The Partnership will apply for funding for a large genetics study as well as an

    Dr Luis Nacul

    expansion of the UK/MECFS Biobank

  • If funded, the genetics study will require saliva samples from 20,000 patients.
  • The study will look for the potential genetic cause(s) of ME/CFS.
  • Submitting a sample will be made as easy as possible in order to enable as many patients as possible to take part.
  • Patients, and their representatives, will form an important part of the Partnership.

What is a genome-wide association study?

A genome-wide association study (GWAS) is a very large genetic study that seeks to uncover some of the biological roots of ME/CFS. By probing small DNA differences among people, a GWAS can help to pinpoint the genetic causes of disease and then can help to guide drug development.

This design has previously proved helpful in identifying genes together with molecular and cellular pathways that contribute to disease risk.

To work well, the study needs to recruit around 20,000 patients whose DNA will be compared with that of similar numbers of non-ME/CFS matched controls(i.e. people from a similar population but who do not have ME/CFS).

More information:

MRC: ME/CFS Workshop – 2019

The ME/CFS Biomedical Partnership: Genetics and Biomarkers – Genome-wide association study: questions & answers

Cure ME: A Collaborative Research Proposal with the CMRC

ME Association: MRC/NIHR Workshop

Action for ME: ME/CFS Biomedical Partnership to apply for funding 

ME Research UK: ME/CFS Biomedical Partnership to apply for funding

Posted in News | Tagged , , , , , , , , , , | Leave a comment

ACTivate your life course begins Port Talbot 11 Nov 2019

ACTivate your life course

The course is based on Acceptance and Commitment Therapy which teaches people how to reduce their suffering and how to lead a richer, more fulfilling life by accepting the things they cannot control and making a commitment to do the things that they really care about.

We all experience suffering, pain and distress at some point in our lives, whether this be psychological or physical, so anyone and everyone is welcome to attend.

The course is run weekly over four sessions for approximately 2 hours with a break halfway through the session.

The four sessions:

  • ACT 1- You are not your mind
  • ACT 2- Facing up to your life
  • ACT 3- Being mindful
  • ACT 4- Living wisely, living well

Neath Port Talbot

  • Venue: St Paul’s Centre, Gerald Street, Port Talbot, SA12 6DQ
  • Room: Main Hall
  • Monday 11th November – 2nd December 2019    2-4 pm

The courses and workshops are free, self-referral and open access, so there is no need to book on or register, simply choose what you feel is the most suitable for you and turn up; feel free to bring someone along and spread the word. There is no attendance register, but it is recommended that you attend all of the sessions to get the most out of it, although you can always switch between courses to fit in with your commitments.

For more information contact the Living Life Well programme at Abertawe Bro Morgannwg Health Board.       07967612246      living.lifewell@wales.nhs.uk

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend.

Posted in News | Tagged , , , , | Leave a comment