Coeliac Disease and Prescriptions

Nic Dakin Excerpts

Tuesday 1st November 2016 Westminster Hall

[Mr Jones]

That is the main point. What some CCGs are doing is a false economy, because one hospital admission will cost more than the annual cost of prescriptions for an individual who adheres to a gluten-free diet.

Another person living with coeliac disease, Janice, who is a constituent of mine, wrote to me saying:

“I strongly believe that these plans will cause more expense to the government when coeliac patients can’t afford shop priced gluten-free foods and don’t stick to their diet and end up with cancer of the bowels”,

as well as other conditions. She went on:

“I am a pensioner and find it increasingly hard to afford luxuries like biscuits and cakes. If I have to add gluten free bread, pasta and cereals to my shopping list this will cause more stress. I cannot have any form of gluten, even in small doses, as I am violently ill.”

As well as a failure to consider the evidence before making decisions to withdraw gluten-free prescriptions, there is also evidence of a lack of public consultation by CCGs. Coeliac UK has been doing a good job of holding CCGs to account. One example it provided is of Trevor, who told Coeliac UK that he has never received confirmation in writing that the policy had changed; he was informed only when Coeliac UK told him. He was diagnosed 10 years ago and has only ever had bread on prescription. He is unable to work and has ongoing medical problems. His nearest shop is a Co-op, which does not stock gluten-free products, and the nearest shop that does is some six miles away. That creates problems for people such as him.

The CCGs that have already removed access to prescriptions for gluten-free products have not outlined or implemented policies that offer alternatives to safeguard patients, such as access to specialist dietary or nutritional advice. When a coeliac patient is taken out of a CCG’s responsibility because their gluten-free food prescription has been withdrawn, that CCG can no longer monitor them or determine the changed policy’s impact on that patient’s health. This is an important factor, and I am concerned that it has not been taken into account by a number of CCGs.

In areas where gluten-free products are not prescribed, there is now no opportunity to encourage dietary adherence nor a prevention strategy for long-term management of people with coeliac disease. Effectively, patients who suffer the condition in these areas will be offered no support by the NHS. Although CCGs are engaged with local authorities and wellbeing boards to explore alternatives, none has yet been put in place.

The NHS has a good track record of involving the public in consultation, but the lack of consultation on the decision to withdraw prescriptions for gluten-free products is a disgrace, added to the fact that charities such as Coeliac UK are not consulted before such decisions are made.

[Nic Dakin (Scunthorpe) (Lab)]

I congratulate my hon. Friend on securing this debate. The point he is making is direct and correct. The nine-year-old daughter of my constituent, Helen Frost, has coeliac disease and Helen is worried that prescriptions for gluten-free products may be taken away. The uncertainty is adding stress to a situation that is already difficult to manage.

[Mr Jones]

That is not even taken into consideration, as my hon. Friend says.

My concern is that cutting prescriptions for gluten-free products is a simple and easy target for CCGs under financial pressure. The entire prescription cost to the NHS in 2014 was £26.8 million or 0.27% of the total prescription budget—£194 per patient. The procurement system that the NHS has in place is not working. The market for gluten-free products in the UK in 2014 was some £211 million, but the annual NHS budget was around £27 million or 13% of that total market. I do not know why the NHS cannot negotiate contracts with some commercial companies. Failure in procurement will clearly have an impact.

I turn to the issue of pharmacists. Back when we had primary care trusts, some pharmacy-led supply pilot schemes were set up in a handful of regions in England. When a patient was diagnosed with coeliac disease, the pharmacy-led scheme allowed patients to access gluten-free food and to manage their coeliac disease. However, with the establishment of CCGs, that seems to have gone out of the window—except in Scotland, which has a national gluten-free food service: a pharmacy-led scheme based on pilots in the UK.

Will the Minister seriously consider introducing such a scheme in England? It would save time and money and be a better way of managing people with coeliac disease. It is worth noting that the annual cost of gluten-free food is lower than the annual cost of items that the NHS provides that cost less over the counter—for example, paracetamol and so on. I beg the Minister to consider that, if properly done, what I suggest would save money.

I know the Minister has been in post for only a few months and I am sure he receives many demands for things to be provided by the NHS, but I am also sure his officials have briefed him on the principles of the NHS: that it is a comprehensive service available to all with access to NHS services based on clinical need, not individual ability to pay, and that it aspires to put patients at the heart of everything it does. This issue is about limiting choice because of cost.

In conclusion, the issue needs urgent intervention. It is not fair to individuals and there is a postcode lottery. A pharmacy-led system could be delivered better and more effectively. At the of the day, the people affected have no choice but to have a gluten-free diet. We should not ration care for some of the most vulnerable in our society.