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Family's plea: Give mum operation she needs to get her life back

By Somerset Guardian  |  Posted: September 06, 2012

  • CARE: Alison Jukes and her partner Tim with their children George and Charlie

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Teenagers George and Charlie Jukes are appealing to health chiefs to have a change of heart and fund an operation that will give their desperately ill mother her life back.

All they and dad Tim want is to see is 42-year-old Alison sitting at the dining table eating a meal with them and to be able to return to the role she wants most, caring for the family at Charlton Park, Midsomer Norton.

Instead Alison, who has lost 40 per cent of her bodyweight, has to take her nutrition through a feeding tube – a process which takes up to 15 hours to complete – and only sips water.

She has also has to take strong painkillers to counteract the discomfort she feels.

Alison was diagnosed with gastroparesis in January after suffering ill health for more than a year. The illness means her stomach has a delayed emptying rate and food does not get into her digestive system.

She described her condition as similar to having a jar in her stomach that continues to fill but does not empty.

The first option for treatment was a tablet regime but this did not work and the feeding tube was prescribed.

An operation to insert a gastric pacemaker on to the stomach that will stimulate the muscle causing it to empty normally has been carried out on other patients and proved successful but Bath and North East Somerset Primary Care Trust has refused to carry out the procedure.

The operation is expensive, costing about £20,000, and not within the normal PCT guidelines so the family had to put forward a case for funding which was rejected, as was a later appeal.

But the family believes that the procedure does meet the guidelines set out by the National Institute for Health and Clinical Guidance.

The family said they were told that Alison would have a better quality of life with the feeding tube but they believe the opposite is true.

Although the tube has stabilised her weight loss it often gets blocked and has proved a struggle to clear. Alison either has to sleep with the tube pumping at night, or use it during the day.

The pump can go in a backpack but with Alison so frail it is too heavy for her to carry around, so she uses it at night and she says has not had a complete night's sleep since it was prescribed.

Now her weight loss and frailty has led to her becoming almost housebound with her friends and former workmates failing to recognise the once bright and bubbly woman who was a teaching assistant at St John's School, Midsomer Norton.

She was involved with the school cookery and gardening club and as a former chef was able to help steer the school towards its bronze, silver and gold Food for Life awards, and met Prince Charles when he presented the school with the silver award.

The devastated family said they do not know what to do or who to approach to help.

They have considered selling their home to pay for an operation or moving house to an area where the procedure would be funded.

George, 17, said: "It's affecting our whole family life and we are desperate for a positive outcome.

"We just don't know where to go. Mum is upset a lot of the time and it is not right."

Alison said: "It's not just me but the whole family that is suffering with me. Surely I have the right to eat food.

"It seems to be a bit of post code lottery as I know two people who have had the operation carried out – one in Bristol and one in Gloucestershire.

"I just feel they have done what they have felt they had to do to keep me alive but they haven't given me a life."

A spokesman for NHS B&NES said they could not comment on individual cases.

He said: "Funding panels consider clinical circumstances of patients, expected risks and benefits of the treatment proposed, the clinical evidence supporting the treatment and the cost of the treatment.

"Applications are approved when sufficient evidence is shown that treatment is likely to be clinically effective."

Anyone who can help the Jukes family is asked to call the Somerset Guardian on 01761 417778 or email editor@somer setguardian.co.uk.

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