Mum denied treatment by NHS for debilitating illness

A mum-of-two who was diagnosed with debilitating illness gastroparesis said she had been denied treatment by NHS West Sussex which could help her lead a normal life.

Samantha Rose, 27, from Langley Green, was diagnosed with the condition in 2010.

The mum-of-two has spent seven years in and out of East Surrey Hospital and has to be hooked up to a nasogastric feeding tube so she does not have to eat solid food.

Samantha will never be cured of the illness but has been made aware of a treatment called a neuro stimulator which works in the same way as a cardiac pacemaker and would be sewn on to her stomach to aid gastric emptying.

But she says her funding application for the treatment has been turned down by NHS West Sussex.

Samantha, who has just been admitted to hospital again, said: “The vomiting lasts on average of seven days by which time I am very unwell and my muscles are weak due to the fact that I am bedridden and I suffer hugely with weight loss.

“My sons are struggling with the illness never knowing how long mummy will be at home before she is in hospital again.

“I fear that it won’t be long before my body cannot cope with it [the condition] anymore.

“I have been told the cost of treatment is approximately £22,000. An overnight stay in an NHS hospital is in excess of £300 per night so bed space alone I have just used £7,200 of NHS funding in eight weeks.

“If one were to add up the costs of all my care to date it will be far in excess of what the cost of a neuro stimulator would be.”

Samantha spent the first few weeks of both of her sons’ lives in hospital. During her pregnancy with her eldest, Mason, she spent two weeks of every month vomiting.

She now spends on average 10 days of every four weeks in hospital. She added: “It is upsetting and frustrating for us all to know that there is a potential for my illness to be managed.

“If I cannot get the treatment then the only option left to me is to have a permanent feeding tube fitted and never eat normal food again. I am 27, acutely ill, and I want to be around to watch my children grow up. Is it really that much to ask?”

A spokeswoman for NHS West Sussex explained that some drugs and treatments were not routinely funded on the NHS.

She added: “We recognise that patients applying for individual funding for these drugs or treatments are in extremely difficult positions and we consider each application individually and in detail, reviewing all of the available evidence very carefully and with expert medical judgement.

“For cases like these, such as Miss Rose’s, we have a robust process which takes these requests to a specialist panel of consultants, GPs and lay people.

“Together they look at the clinical evidence for the treatment or drug being requested and consider it thoroughly.

“In line with this process, a specialist panel of four consultants, three GPs and two lay people considered Miss Rose’s case earlier this year and from evidence presented to it at the time turned down the request as the panel agreed that there wasn’t sufficient evidence to show that the treatment requested would be effective for Miss Rose.”

She added: “We do understand the difficult situation that people are in when they come to us for individual requests and we hope that Miss Rose is able to work with her clinicians to receive an appropriate package of care and support.”