Mother's plea for specialist care


A mother is calling on the government to provide a dedicated nursing team for people with motor neurone disease in Yarmouth after she was diagnosed with the illness and discovered she could not get specialist care.

Ann Franklin, 48, from Caister 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 Ms Franklin, 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 Ms Franklin has suffered from difficulty walking for the past three years and faces the prospect of eventually being confined to a wheelchair.

She has been told she has a rare 'slow burn' form of the disease, primary lateral sclerosis, which 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 her son 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.”

Are you fighting to gain better access to healthcare? Call Evening News reporter Sarah Hall on 01603 772426 or email sarah.hall2@archant.co.uk

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