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Northern Ireland trust in U-turn over care needs of Parkinson's patient giving hope for family

By Stephanie Bell

An elderly Belfast man with Parkinson's disease has been forced to stay in hospital for four months because of a dispute over his care needs.

Norman Vance (76) was deemed well enough to leave the Ulster Hospital in October, but is still there because the health trust and his family disagree on how he should be cared for.

His family say his condition is now so complex that he requires a high level of nursing care.

During a meeting to discuss Norman's future last week it was revealed there were no facilities in Northern Ireland to cater for patients with advanced Parkinson's.

However, the trust did finally agree with the family that Norman's needs are complex and he requires to be assessed for a high level of care.

Up until this week the trust would only assess his social care rather than his health care needs.

It was while staying in a nursing home for a few weeks respite last summer that Norman became so ill he had to be taken to hospital, where he was found to be suffering from severe dehydration, malnutrition and high infection levels.

His wife Linda (65), who works as a classroom assistant in a special needs school, said: "Norman has good and bad days.

"His hallucinations and delusions and confusion are now at a very high level and some days he becomes manic.

"When he is manic he just wants to walk and walk until he drops.

"As a family we have to feed him and we go into the Ulster Hospital every day to give him his meals and ensure he is eating.

"It is horrendous. I am so exhausted. I am exhausted going back and forward to the hospital, I am exhausted worrying about Norman and I am exhausted worrying about my children, and they are exhausted and stressed too.

"We shouldn't have been put in this position.

"We have had meeting after meeting and thankfully this week we were given some hope when it was agreed that the assessment of his health care needs should be done as soon as possible."

Linda continued: "Sometimes when you talk to him he is lucid, but half-an-hour later he wouldn't remember what you said.

"It has been a battle all of this time and we were worried it would be taken out of our hands, but thankfully now we might finally get some movement."

Norman was in his 40s when he developed Parkinson's disease 29 years ago.

The condition has steadily progressed to an advanced stage, meaning that he is often confused, is unsteady on his feet and frequently falls and injures himself.

Linda had always cared for Norman at home, but when she broke bones in both of her feet after tripping on her doorstep last July, he had to go into a nursing home while she recovered.

That experience illustrated to the family just how crucial it was that Norman receive nursing care in a home where staff are experienced in dealing with Parkinson's patients.

Linda claimed: "The nursing home he was in didn't know how to meet his needs and he got very ill.

"We got him to hospital and he was severely dehydrated, malnourished and had high levels of infection.

"He cannot go back to a nursing home that provides basic care like that, and needs a high level of care.

"At the meeting with the team from the trust this week it was revealed that there are no nursing homes specialising in Parkinson's' patients in Northern Ireland.

"The trust will be liaising with Parkinson's UK to see what can be done.

"We as a family are still looking forward.

"He still has a life to lead and it doesn't matter how long or how short that will be, we believe it has to be the best life we can give him."

In a statement, the Belfast Health and Social Care Trust said: "We are reviewing Mr Vance's individual needs and continue to work with his family to resolve all issues within the current constraints of the service and legislation."

Norman's case is highlighted today as Parkinson's UK publishes the alarming results of a new study which shows that carers of people with advanced Parkinson's are at risk of 'burning out'.

For the first time, research from Northumbria Healthcare NHS Foundation Trust has painted a detailed picture of how carers are stepping up to support their loved ones as their Parkinson's symptoms become more complex, including issues with mobility, balance and mental health, and the strain this is having on the carer.

The research showed that 69.2% of carers needed respite, while an additional 30% were at risk of burning out.

Parkinson's UK says this is particularly concerning as 45% also reported having their own health conditions which impacted on their ability to care.

Caroline McEvoy, Northern Ireland campaign, policy and communications officer with Parkinson's UK, said: "This study shows just how much family members are stepping up to bridge the gap between the needs of their loved ones and social care services.

"It is clear that as a person's Parkinson's progresses, the strain on the carer increases. This is extremely worrying as almost half of carers had their own health conditions and may not be able to cope with the extra strain.

"With advanced Parkinson's, symptoms become more complex and can impact on every area of a person's life, both physically and mentally, so it comes with its own unique challenges for carers too.

"That's why it's vital that social care is well funded for the long-term."

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