HELP US WALK: The NHS responds

All three children need a selective dorsal rhizotomy operation which until last year, was only available in America.

Robbie’s family are waiting to find out if NHS Swindon will fund the operation for him at Frenchay Hospital in Bristol, while Robbie’s family have already started fundraising in case he is refused the op on the NHS.

Alycia’s family have just started fundraising so she too can have the operation. She has been seen at the Robert Jones and Agnes Hunt Orthopaedic Hospital, in Oswestry.

Self-funding the operation in America would cost about £50,000; self-funding in the UK would cost around half that.

Last Tuesday, the Swindon Advertiser put a list of questions to NHS Swindon, some on behalf of the parents of the children involved, who feel they have not been given enough information by their local PCT.

Here are a list of the questions, and the answers we have been given from medical director for NHS Swindon Dr Liz Mearns.

Q. What are the exceptional circumstances that the NHS look at when considering each individual case?

A. Each case presented is considered on its own merits, and assessed to see whether there are exceptional benefits from the treatment. The review considers specific aspects affecting each person, including relevant clinical factors and impact on their daily living.

Q. If a child has other underlying health problems will that affect whether the NHS will fund their surgery or not?

A. Many factors are taken into consideration, such as the likelihood and nature of possible complications that might affect the individual as well as any alternative treatments or procedures available.

Q. Even though the families have been refused the operation on the NHS, why can they not make the decision to pay for it privately themselves?

A. Patients not approved to receive this treatment from the NHS can choose to self-fund the treatment. To respect patient confidentiality, we are unable to comment on individual cases.

Q. What process do the applications go through and who looks at the applications?

A. Applications for this specialist treatment are considered by a panel of professional and lay members on a case by case basis and individuals have the right of appeal to a different panel of professional and lay members.

Q. If the cost to the NHS to care for these patients has been estimated to cost approximately £33,000 until they are 21, how can the NHS describe the operation, which costs about £24,000, as not being ‘cost efficient’?

A. No answer.

Q. If the operation has such a high success rate in America, why is it not available for these children?

A. The future of this treatment is under consideration by the South West Specialised Commissioning Group.

Q. Have any such operations been sanctioned for children in Wiltshire and Gloucestershire? If so, how many operations?

A. No answer.

Q. If any have been sanctioned, how did their circumstances differ from those refused so far?

A. No answer.

Q. Are you prepared to meet the families in Swindon featured in the Swindon Advertiser face to face to answer their questions and concerns?

A. No answer.

Q. Have you or any of your management team met the consultant in Bristol carrying out these operations to discuss success rates and find out about the benefits to recipients?

A. No answer.

Natasha Ellis, whose six-year-old daughter Alycia has had a number of appointments in Oxford to have the operation in Leeds but has been refused, said: “I just wanted to know why they won’t change their decision on Alycia – how can they say no to her. We will fight this and we will go to America, but if they are saying yes in the States how can they say no here?

“We will continue to fight this for other families – there are so many people we have seen like Alycia who have had this operation and it has made such a huge difference. It affects so many people.”

Swindon MP Robert Buckland and Justin Tomlinson are arranging a meeting with the families and NHS Swindon to help them get the answers they want.