Belfast Telegraph

Health trust abandoned us, says wife of Parkinson’s patient who faces 150-mile journey after clinic closes

By Donna Deeney

An elderly man with the neurological condition Parkinson's Disease faces a 150-mile round trip from Londonderry to Belfast for treatment after a neurologist said he could no longer operate an outpatients' clinic at Altnegelvin Hospital.

Ernie Hamilton is among more than 300 people in the Western Trust area who could be affected by the decision.

Some patients have already endured more than two years without a review, an essential part of the treatment for the debilitating disease, which affects the nervous system.

Among them is Mr Hamilton, who hasn't seen a consultant neurologist since 2015.

Mr Hamilton was diagnosed with Parkinson's four years ago and needs 24-hour care.

The lack of mobility and tremors have left him reluctant to leave his home in Claudy.

His wife Mary, who survived the 1972 Claudy bombing and who, like her husband is in her 70s, said they feel as if they have been totally abandoned by the Western Health Trust.

Mrs Hamilton told the Belfast Telegraph: "Ernie was under the care of Dr Hunt, who is a specialist Parkinson's neurologist, but Ernie hasn't had a review for almost two and a half years.

"I feel we and others like us have been abandoned by the trust ... it is the people who need him so much that are suffering.

"When Ernie's review appointment didn't come when it was supposed to, I rang and rang the hospital to see why he wasn't being called. But they kept putting me off until I rang the Patient's Advocate and then I was told there was no one able to see my husband.

"Ernie takes 32 tablets every day and without his medication our lives would be unimaginable, but it is so important that people with Parkinson's see a neurologist because the medication can stop working or it may need to be changed.

"It makes me so mad when I look at how much my husband is suffering.

"He is far from being the only one, but while we are being left to suffer the politicians are talking about another election that is going to cost in the region of £5million. That money could go a long way towards helping the likes of us.

"Parkinson's is a very complicated and complex condition which affects everybody differently and my husband struggles with movement.

But he also struggles to get his breath at times. It is not unusual for him to wake up looking for help dozens of times a night, in fact I counted him calling for me over 80 times in just one night.

"I took two seizures that our GP said were down to sheer stress from being up all night looking after my husband. My three daughters take turns in staying overnight so that I can get some rest but they have their own families to think about too.

"We have carers who come in four times a day and I do not know what I would do without them, they are fantastic. Our own GPs are very good too but they are not experts in Parkinson's and that is what we need.

"We have been told to prepare to go to Belfast for Ernie's reviews from now on, but we are both in our 70s and Ernie isn't getting any better, in fact he is deteriorating and just isn't up to the 150 mile journey to Belfast and back."

In total, 319 people are affected by the loss of the outpatient clinic at Altnagelvin which Jack Glenn from the Parkinson's Society's Foyle Branch described as "extremely worrying."

Mr Glenn explained: "Not having a specialist neurologist for Parkinson's patients in the Western Trust is extremely worrying because there is a knock-on effect in that unless patients are being reviewed they will deteriorate at a rapid rate.

"It is essential in the treatment of Parkinson's that medication is reviewed regularly and the recommendation is that this is done every six or 12 months at the most. Without this, the chances of a patient needing hospital treatment increases significantly, which in turn costs the health service more.

"The other difficulty is that having no neurologist specialising in Parkinson's is delaying diagnosis of new patients and the longer someone goes untreated the worse the condition will be when they do eventually get their diagnosis.

"What we really need here in the Western Trust is a specialist Parkinson's neurologist based in Altnagelvin or, at the very least, a replacement for Dr Hunt as a matter of urgency."

A spokesman for the Western Trust said: "The Western Trust regrets that any individual has to wait longer than necessary for a review appointment and is working to find an appropriate solution with Belfast Trust."

The Belfast Trust said: "All Belfast Trust neurologists have existing clinical commitments. It has not been possible for a replacement to undertake the work associated with this clinic."

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