Association of Young People with ME

A judicial review of the National Institute for Health and Clinical Excellence, (NICE) Guideline on CFS/ME scheduled for 11 and 12 February 2009. Some patients and medical researchers claim that the correct protocols were not followed when the Guideline was produced. These patients fear that patients may be pressured into accepting treatments, which at best may be useless and at worst could cause real harm.

Why AYME welcomes the NICE Guideline

Thanks to the NICE Guideline, funding is now being made available for CFS/ME patients that was not being released before. Strategic Health Authorities (SHAs) and Primary Care Trusts (PCTs) now have to fund NHS provision such as physiotherapy, cognitive behavioural therapy (CBT), Graded Exercise and Activity management programmes and treatment (medication) for patients.

AYME acknowledges that the Guideline is not perfect. The 317-page NICE Guideline on CFS/ME was written taking account of 169 stakeholder groups and individual responses as well as personal testimonies from people with CFS/ME.Any consensus document based on limited research evidence on cause, management and treatment is going to have areas that cause dissent. The NICE Guideline is a foundation for us to work with, and the review (date to be confirmed) will gather evidence to further inform the current advice on the care, management and treatment options that should be available within the NHS.

Guideline provides access to treatment

In our view, the Guideline gives patients and patient organisations an effective tool to ensure that PCTs deliver the services that people with CFS/ME need and are entitled to. The delivery of such services has for too long been at best patchy and at worst non-existent. Before the Guideline was launched there was no obligation for PCTs or SHAs to provide services for patients with CFS/ME. Now they have to say what services are provided and if there are none within the region, they have to fund treatment out of the area. Before the Guideline, people faced years of battling to obtain funding for diagnosis and treatment.

Patient choice

The NICE Guideline gives the patient choice. It does not compel the patient to accept treatment. The Guideline will support those who have previously fallen through gaps in the healthcare system, such as those severely affected and housebound to access services and the required funding.

Throughout the Guideline, there is strong emphasises on patient involvement, patient-centred programmes and patient choice: this is what AYME sees as its strength. CFS/ME is an individual condition affecting every patient differently. One model of management does not suit everybody. The specialist CFS/ME team explores with each patient what will suit them and what might best help them.

All NHS CFS/ME specialist services work collaboratively and for the last five years have received training, informed by ongoing patient feedback. Some of the lead clinicians have over twenty years’ experience of treating the condition. Each of these specialist services has a patient members and AYME is represented on several steering groups.

The NICE Guideline emphasises that management and treatment of CFS/ME must be delivered by professionals who are trained and experienced in the complexity of the condition. AYME acknowledges that inappropriate delivery of CBT and GET can be harmful.

‘Healthcare professionals responsible for caring for people with CFS/ME should have appropriate skills and expertise in the condition’. 1.1.3.1 ‘Primary healthcare professionals should be familiar with and be able to identify the characteristic features of CFS/ME’. 1.2.1.1 Healthcare professionals should be aware that symptoms of CFS/ME fluctuate in severity and may change in nature over time’. 1.2.1.3 ‘Advice on symptom management should not be delayed until a diagnosis is established’. 1.2.3.1

How AYME uses the NICE Guideline

Using the Guideline, AYME has helped children and young people that are bedbound and housebound with CFS/ME, in some cases for years, to access treatment. The publication of the Guideline has meant that AYME members have been able to get the treatment they have been fighting to receive. By making it clear that CFS/ME is a condition that should be recognised by medical professionals, by providing clear guidance on the treatments that should be made available to patients and by emphasising the importance of a patient-led programme of treatment, the Guideline has taken a vital step towards securing higher quality care for CFS/ME patients.

What it would mean to lose the NICE Guideline

Immediately the funding of the specialist CFS/ME teams would be at risk. Fighting to get more services in areas where there are none, would become impossible. We would not have managed to get the East and North Hertfordshire CFS/ME service reopened (see article on website) and the Leeds CFS/ME service would not have had funding for its paediatric service reinstated without the Guideline.

If we lost the NICE Guideline, we would see fewer professionals attracted to specialising in the condition. We would go back to the bad old days without services, with children not being diagnosed, believed or understood and a lack of awareness being raised amongst other professionals in social care and education.

For further information please contact:

Mary-Jane Willows: CEO AYME Mobile: 07977060553

Katie James: Press Officer Mobile: 07816989067

Office 01908 379737 www.ayme.org.uk

Article last edited on Monday 03rd August 2009 Printable Version

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