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MND sufferer's distress

PUBLISHED: 14:14 19 February 2009 | UPDATED: 13:04 03 July 2010

AFTER receiving the devastating news she has motor neurone disease, a Caister mum was dismayed to discover she will not receive specialist nursing care.

AFTER receiving the devastating news she has motor neurone disease, a Caister mum was dismayed to discover she will not receive specialist nursing care.

Ann Franklin, 48, was told she had the degenerative disease which attacks the nerves in the brain and spine last month.

Coming to terms with the traumatic prospect of losing her mobility has been made worse by the fact there is no dedicated nursing for sufferers at the James Paget University Hospital.

There are three neurology nurses at the Norfolk and Norwich University Hospital, but patients from the Yarmouth and Waveney NHS Trust do not have access to them.

Now Ann, who has an eight year old son Max, is writing to health secretary Alan Johnson and NHS bosses in a bid to reverse the situation.

She said: “It is totally unfair that just because I live here I have no access to nurses and need help to cope with the emotional impact.

“When told something so devastating your first thought is how am I going to deal with this? I feel isolated and alone. It has been even more difficult to cope with as my dad died the same week as my diagnosis.

“Family and friends have given me a lot of support but it must be a shock for them, it is something they are struggling to cope with too. I have got a physiotherapist and occupational therapist and what they do is fantastic, but they do not have the specialist knowledge of my condition.

“I was told there is a community nurse funded by the Multiple Sclerosis and Parkinson Disease Societies but she is not able to see people with MND.”

Student counsellor Ann has suffered from difficulty walking for the last three years and now faces the prospect of eventually being confined to a wheelchair.

It was finally confirmed she had a rare 'slow burn' form of the disease, primary lateral sclerosis, last month that causes crippling weakness in the leg, but does not reduce the life span of sufferers.

Previously a keen skier and walker, Ann now cannot kick a ball about with Max and is coming to terms with eventually losing her mobility.

She said: “I have explained to Max I have a problem with my legs, how do you tell your child about something like this.

“I first noticed there was something wrong when I jumped off a ride at a funfair and fell on the floor, my legs could not take the weight.

“I had trouble walking for the last three years and in my heart of hearts knew there was something wrong. Before I never thought it was something that could happen to me - how do you cope with going from being able bodied to losing your mobility.

“Now I look at people in wheelchairs and think that what they going through I will be experiencing too.”

A spokesman for NHS Great Yarmouth and Waveney said: "We currently offer help and support to people with motor neurone disease through GPs and our district nursing, occupational therapy, physiotherapy and palliative care teams.

“One of the key priorities in our strategic plan for the next five years is to make sure that everyone with a long-term condition has easy access to high quality services and individual support. As such, we are currently looking at the possibility of commissioning specialist nursing posts as part of our work to develop new care pathways and improve the services we offer.”

·Motor Neurone disease (MND) is a neurological disease which can affect any adult usually over 50.

·There are four types of MND and those with the more common form ALS have an average life expectancy of two to five years.

·It affects the Motor Neurones which are the nerve cells which control muscles.

·As the nerves die the sufferer becomes increasingly disabled unable to walk and in some cases speak or breathe unaided.

·The cause of MND is unknown and there is no known cure although physiotherapy and medication does help.

·MND affects 5,000 people in the UK at any one time -1,600 people die each year.

·Sufferers included actor David Niven and football manager Don Revie. Professor Stephen Hawking is the longest known survivor of MND.

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