MEA Evidence to Health Committe for Management of Long Term Conditions

[Firestormm]

Evidence to the Commons Health Committee Inquiry into the Management of Long-Term Conditions

by Tony Britton on June 19, 2013
The ME Association submission to the House of Commons Health Committee Inquiry into the Management of Long-Term Health Conditions was entered on the record when the first evidence session was held this morning. Our submission appears below.

The Inquiry has been set up to investigate how the NHS and social care in England supports people with long-term conditions. There are over 20 million people in England living with one or more long-term conditions; between them, they account for 70% of health and social care spending.

The MEA submission describes missed opportunities to act on policy recommendations, great difficulty in accessing adequate services and how advice given on managing the condition can be inappropriate and even harmful. And we call for urgent action to be taken on five key points.

Witnesses called today were: Dr Karen Lowton, Senior Lecturer in Ageing and Health, Institute of Gerontology, King’s College London; Professor Alan Maynard OBE, Professor of Health Economics, Department of Health Sciences, University of York; Dr Sue Roberts CBE, Chair, NHS Year of Care Partnerships; and Dr Judith Smith, Director of Policy, Nuffield Trust.

To catch the televised recording of today’s session, click HERE.

Summary of Evidence from MEA:

SUMMARY
The key points being made in this submission relate to:

* Lack of sound epidemiological data on the prevalence of ME/CFS – which is needed to plan hospital-based services
* Unacceptable delay in diagnosis and misdiagnosis – leading to poor management and poor prognosis
* Lack of undergraduate and postgraduate medical education
* Lack of hospital-based referral services in many parts of the UK resulting in a ‘postcode lottery’
* Lack of hospital-based referral services for children and adolescents – even though ME/CFS is one of the commonest causes of long-term sickness absence from school
* An almost complete absence of hospital-based services and domiciliary services for people with severe ME/CFS
* A NICE guideline on ME/CFS which many people with ME/CFS, and their charity representatives, find unfit for purpose​

Dr Shepherd on Facebook earlier:

This is a document that can obviously be used by people/local groups who are talking to their MP and/or Clinical Commissioning Group about an existing NHS referral service, or plans to develop a new referral service.

There's a lot to this submission, I'm still going through it all and watching/listening to the meeting.

 

[Firestormm]

Darn. I thought Charles had given an oral submission. Never mind. This was the recommended action from the MEA:

3:2 Action therefore needs to be taken in the following areas:

13:3 An epidemiological study to establish the number of people – adults and children – with ME/CFS, along with the degree of severity. This will enable Clinical Commissioning Groups to plan an appropriate local level of service provision.

13:4 All health professionals should receive a proper period of medical education on the diagnosis and management of ME/CFS during their training. ME/CFS should also form part of continual professional development/education at a postgraduate level.

13:5 Early and accurate diagnosis in primary care, along with appropriate early management, to reduce the chance of a more severe and prolonged illness occurring.

13:6 An end to the postcode lottery of NHS referral services – everyone with ME/CFS, adults and children, severely affected, should have access to a local hospital where physician-led specialist input on diagnosis and management can be obtained, where appropriate.

13:7 Physician-led multidisciplinary management programmes should be introduced which recognize that treatment has to be tailored to individual needs based on stage, severity and symptom.

The ME Association would be very willing to give oral evidence to any of the hearings that the Health Committee intends to arrange on this very important topic.

 

[Sasha]

This is the sort of thing that the MEA plugs away on that is hugely important but I think people tend to overlook it. A very good submission, I thought.

 

[Firestormm]

This is the sort of thing that the MEA plugs away on that is hugely important but I think people tend to overlook it. A very good submission, I thought.

Tends to be why I regard them as the 'leading charity' and not others who use that phrase Call me biased