ME treatment in Sussex “still needs to improve”

From the Brighton Evening Argus, 14 December 2009 (Story by Siobhan Ryan)

It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.

The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.

This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.

But things have now changed significantly for the better.

ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.

But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.

The group has recently published an interim report on its inquiry into the NHS services available.

Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.

“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.

“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”

Thousands of people in Sussex are believed to have the condition, with some extreme cases finding themselves bedridden.

MANY HAVE BEEN HELPED BY THE SUSSEX SERVICE

Many have been helped by a specialist NHS ME service based in Mid Sussex.

Colin Barton, an ME sufferer and chairman of the Sussex ME/CFS Society, said it was providing a good service.

But demand is so high it needs more funding from primary care trusts (PCT) to help it continue and expand.

He said: “More and more people are getting diagnosed earlier and people are becoming more aware of the disease over the years.

“The earlier they get access to treatment the better, and they need to have access to the treatment and support they need.”

The team in Burgess Hill has three specialist GPs, two physiotherapists, two occupational therapists and one psychologist.

It also provides advice to GPs to raise awareness of the signs of the condition.

Mr Barton said: “People have now been getting the treatment they need at an earlier stage so they are not getting as sick as they might once have done years ago.”

The number of children being diagnosed with ME is also on the rise.

Monique Taratula-Lyons was nine when she was diagnosed with ME in April last year after numerous bouts of infections, tonsillitis and glandular fever.

Now ten, the youngster is under the care of doctors at the Royal Alexandra Children’s Hospital in Brighton.

EARLY DIAGNOSIS SPEEDS RECOVERY

Her mother Fiona Taratula, 44, from Hove, said the early diagnosis had led to her daughter’s speedy recovery.

She said: “We have been very lucky because of the local services available but it is appalling there are some people in some parts of the country who are not able to get access to the services they need just because of where they live.

“There should not be a postcode lottery like that and it is good this issue has been brought to light.”

The work to continue developing NHS ME treatment and support in Sussex is continuing.

A spokeswoman for Brighton and Hove City PCT said plans were under way to develop a specific ME service for children and young people in the city which should be running in the next 18 months to two years.

She said: “Services like these are not well developed nationally so this will be an innovative project.

We are planning to work closely with Great Ormond Street Hospital in London.

“Initially, we plan to pilot the service in Brighton so we can ensure we are providing the most effective and efficient service possible for the children and young people who use it.”

“NHS colleagues in East and West Sussex will be involved so learning can be shared across Sussex.

“Families with experience of living with CFS/ME and caring for people with this debilitating condition are helping us to shape the service and we are very grateful for their input.”

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