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Inequalities in MS care leave Colchester patients feeling abandoned - the MS Trust discover

IN 1993 Jay Denton’s life changed forever.

She went from being able-bodied and care free to having her first traumatic multiple sclerosis episode.

She was just 23.

For five months she could not hold a pen, partially lost her eyesight and was unable to walk properly.

However, Jay, who lives at Highwoods, in Colchester, had relapsing remitting MS where the symptoms can be treated with drugs and sometimes disappear for years at a time.

For years, Jay enjoyed good health but her debilitating symptoms returned when she was pregnant with her now 15-year-old daughter, Rebekah, and she was diagnosed with MS when she was 32.

Jay now has secondary progressive MS which has left her wheelchair-bound with chronic health issues.

With the thousands of people suffering from MS across the UK, it could be reasonably hoped the NHS was geared up to provide lasting support.

However, a new report has revealed this not to be so with the level of care falling below NICE’s quality standards.

The MS Trust discovered out of 1,857 UK patients surveyed about their care experiences, 12 per cent of progressive patients have not seen an MS specialist in the past year.

For those with relapsing remitting MS, 79 per cent had seen a neurologist or specialist nurse in the previous 12 months.

Only 55 per cent and 60 per cent of those with secondary progressive MS and primary progressive MS, where people’s symptoms get progressively worse from the outset, rather than as relapses, had seen their specialist.

Despite NICE recommending all adults with the neurological condition are offered a comprehensive review at least once a year, the findings suggest this is not the case.

There are an estimated 530 people under the NHS North East Essex Care Commissioning Group with MS - yet there are just 1.5 nurses available to support them.

These inadequacies are reflected nationwide.

The report also highlights nurses managing unsustainable caseloads and MS patients being prematurely discharged from the care of specialists once their symptoms become progressive.

Sufferers have reported feeling abandoned and left to manage their symptoms alone.

Mrs Denton, 46, has not seen a neurologist for six years.

The mother-of-two said: “Relapsing remitting MS is the most common form for which there are quite a few medications which seem to help with altering the course of their disease.

“They tend to have closer monitoring by healthcare experts because they’re on quite toxic drugs but with progressive MS, it’s more a case of symptom management.

“I tend not to see my GP about anything MS-related but I see my MS nurse every six months at my own request because I don’t want to slip through the cracks.

"MS nurses and occupational nurses are fantastic because they come into your home and give you real practical help.

“I’m blunt about my condition because I know there’s nothing the NHS can offer me and I go into appointments with my own research, which I gain a lot from other MS sufferers online.

“It almost seems like if there isn’t a magic therapy which will stop the MS, getting the therapies to support the day-to-day living isn’t as important to the NHS.”

The solution?

As part of their one-year MS Forward View project, the MS Trust is working with NHS managers and MS teams to better understand the challenges facing specialist services.

The charity has also highlighted multi-disciplinary teams to help fill gaps in services. This will include regular monitoring and early treatment in a bid to maximise brain health as possible solutions.

Due to increasing demand for neurological care in north Essex, Colchester Hospital University NHS Foundation Trust recently agreed to take on a locum consultant neurologist although the contract is only for six months.

The new long-term partnership with Ipswich Hospital which has just been established will also give the trust an opportunity to improve the quality of care for MS patients.

A spokesman for the Trust added: “By working together we can improve services and while it’s still very early days, we’ll be looking at how greater collaboration with Ipswich can benefit neurology patients.”

He added: “The trust currently employs a full-time specialist Multiple Sclerosis nurse and 2.5 consultant neurologists, who all support MS patients.

“In addition, other staff are involved in supporting this group of patients including occupational therapists, physiotherapists, speech and language therapists, a clinical

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