Coeliac Disease and Prescriptions

Kevan Jones Excerpts

Tuesday 1st November 2016 Westminster Hall

[Mr Kevan Jones (North Durham) (Lab)]

I beg to move,

That this House has considered coeliac disease and prescriptions.

It is a pleasure to serve under your chairmanship, Mr Bailey. I am grateful for the opportunity to hold a debate that raises awareness of the problems facing those who suffer from coeliac disease and of access to gluten-free food prescriptions. It would be remiss of me not to thank the work of Coeliac UK, the national charity that represents people with coeliac disease, for not only supporting the campaign around the prescription of gluten-free food, but for its work to support sufferers.

Coeliac disease affects one in every 100 people in the UK. I declare an unwelcome interest: I actually suffer from coeliac disease, although I do not get prescriptions for gluten-free food. It is also worth noting that there are some half a million people in the UK who are completely undiagnosed, according to Coeliac UK.

Coeliac disease is a serious medical condition in which the body’s immune system attacks its own tissue when gluten is eaten. The only medical treatment currently available for sufferers is a strict adherence to a gluten-free diet for the rest of their lives. In the late 1960s, gluten-free food was first prescribed to prevent long-term health complications. However, that rationale has now been challenged by some clinical commissioning groups, despite the fact that their position lacks supporting evidence for withdrawing such prescriptions.

[Jack Dromey (Birmingham, Erdington) (Lab)]

I am grateful to my hon. Friend for bringing such an important debate on an issue that affects so many people. Does he agree that it is absolutely wrong that David Lissaman, a pensioner in my constituency, who thus far has been able to get gluten-free food on prescription, now faces the prospect of losing that as a consequence of the clinical commissioning group’s review? He is a good man who served his country well. In his own words, he will “have to find ways” of significantly reducing the amount of food that he eats, which, because of his other health problems, could put him at risk.

[Mr Jones]

I agree, and I shall refer to certain demographics—pensioners being one—that are particularly affected by these proposals.

Some 40% of CCGs in England are now choosing to restrict or remove support for patients with coeliac disease, which is leading to increasing health inequalities and, basically, a postcode lottery for NHS care, depending on where someone is diagnosed. The CCG’s rationale for going down that route seems to be justified on cost grounds alone. Indeed, Coeliac UK has made a number of freedom of information requests to try to get more details on why CCGs are changing their policies.

I will take a moment to read an example of a response to Coeliac UK’s FOI request, which came from North East Essex CCG, where sweeping assumptions have been made that are completely devoid of any systematic research. That CCG stated:

“We appreciate that there is a large cost-differential between supermarket value brands and GF [gluten-free], but many people within the CCG buy their bread from bakers or do not buy the supermarket value brands and the cost differential is therefore much reduced.”

That type of anecdotal evidence, used by CCGs to justify their decisions about patient care, is in direct conflict with a paper produced in September last year entitled “Cost and availability of gluten-free food in the UK: in store and online”. It said:

“There is good availability of gluten-free food in regular and quality supermarkets as well as online, but it remains significantly more expensive. Budget supermarkets which tend to be frequented by patients from lower socioeconomic classes stocked no GF foods. This poor availability and added cost is likely to impact on adherence in deprived groups.”

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my hon. Friend on securing this debate. The issue does not apply only to elderly people. I have had a number of young people write to me about this, who are very concerned that they may not be able to get gluten-free foods on prescription any more. Has he looked at the possible costs for people who are at the lower end of the earnings scale?

[Mr Jones]

My hon. Friend raises an interesting point. There is evidence—including from my own family—that gluten intolerance and coeliac disease run in families. If a young family includes several children with this condition, the cost could be significant.

[Sir Gerald Howarth (Aldershot) (Con)]

To reinforce the point, my constituent Sheryl Rees has drawn my attention to the fact that her son was diagnosed with coeliac disease when he was two. He is now 11. She pointed out the cost of gluten-free items. For example, a small loaf is £3. A pizza is £4. Pasta is £2 a pack. Basically, she is paying double. She has a family of six. This is really impacting on her family’s budget.

[Mr Jones]

The hon. Gentleman raises an interesting point, especially in terms of families with children. There is also a question of availability in some rural areas. Larger supermarkets stock some of these products at the prices he mentioned and higher, but in other areas the products are not available.

[Kevin Foster (Torbay) (Con)]

Will the hon. Gentleman give way?

[Mr Jones]

I will make a bit more progress.

We have a situation where, in places such as east Essex, the needs of patients are being discounted despite a complete lack of any type of research. I am concerned that more CCGs across the country will begin to use inadequate justifications as a precedent and follow a similar path. That leads me back to my earlier point about the big problem of under-diagnosis. I am afraid we will see a bigger problem if gluten-free prescriptions are not made available to those on low incomes.

[Dr Julian Lewis (New Forest East) (Con)]

On the specific point of failure to diagnose, until 20 years ago I had never heard of coeliac disease, and then I went out with a young lady who, as a teenager, had repeatedly gone to her GP knowing something was wrong. Coeliac disease was never diagnosed until she suffered something analogous to a stroke, which left her permanently all but unable to read. Although she has bravely developed coping strategies over the years, there is no doubt that her life and career have suffered, and she should never have been put in that situation.

[Mr Jones]

The right hon. Gentleman raises a serious point about the life-changing effects that coeliac disease can have. I was only diagnosed by accident, in my 30s; my mother was not diagnosed until she was over 70. Early diagnosis is important, but it is not uncommon for people to live a long time without one being made.

The Health and Social Care Act 2012 included a duty on CCGs to have regard for National Institute for Health and Care Excellence quality standards, but NICE guidance on prescribing gluten-free food for the management of coeliac disease has only recently been published. It says:

“Gluten-free products are more expensive and are usually only available from larger retailers, making access more difficult for people on low incomes or with limited mobility. As coeliac disease can affect more than one member of a family it can also be an additional burden on the family budget”—

as the hon. Member for Aldershot (Sir Gerald Howarth) said.

“To address this, healthcare professionals should help people who may need support to find suitable gluten-free food products on prescription to enable them to maintain a gluten-free diet.”

[Mims Davies (Eastleigh) (Con)]

I declare an interest, having been diagnosed in my late 20s. My cousin and all my second cousins are exactly the same. In fact, at university I was diagnosed with ME because I was so unwell and unable to work at various points.

This debate is an opportunity also to talk about the low incomes and limited mobility that can affect people’s access to these basic items. We must also make a plea through Coeliac UK to supermarkets to ensure that what they provide, which is very expensive, is of better nutritional quality, with lower levels of salt and fat. Although these foods are gluten-free, they might be full of some awful stuff as well.

[Mr Jones]

The hon. Lady raises an interesting point, but I assure her that the products available today are completely different from when I was first diagnosed. The bread then was like cardboard, and today it is very much different.

There is a general duty for GPs to prescribe treatments for health conditions via the FP10 prescribing system where treatment is available, and in the case of coeliac disease that is a gluten-free diet. There is also a duty in legislation for CCGs to reduce inequalities with respect to patient access to services and outcomes, but because of the lack of explicit recommendations on prescribing from NICE, CCGs are being given a fairly free hand to make decisions that run contrary to reducing health inequalities.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate. Prescription of gluten-free food as medication clearly needs to be regulated by the NHS across the United Kingdom. One of my constituents said to me this week:

“The disease is antisocial and can lead to isolation.”

Does the hon. Gentleman agree that the supply of food on prescription can have social benefits, as well as mental, physical and emotional benefits?

--- Later in debate ---

[Mr Jones]

It can. There is some anecdotal evidence about the connection between coeliac disease and mental health. The hon. Gentleman raises an interesting point.

This situation is creating considerable uncertainty for those who rely on access to gluten-free staples on prescription, and it is the vulnerable who are most adversely affected. Individuals with the disease are not eating gluten-free food out of choice or because it is some type of fad or Hollywood diet. They do so because they have to. It is people on fixed incomes or on benefits who receive free prescriptions and those whose households rely on deliveries from community pharmacies who will suffer most if prescriptions are withdrawn.

A number of people have written to me ahead of this debate, and I would like to draw Members’ attention to their cases. Patricia said:

“The diet I and many others follow is not a fad. It is necessary as it will affect my health and wellbeing if not followed, and might actually result in my admission to hospital—an extra strain on the NHS.”

[Rebecca Pow (Taunton Deane) (Con)]

Will the hon. Gentleman consider students in this category? Many of them are on low budgets. They might be tempted not to buy the right food and then end up being sick and in the NHS, costing the state more money.

[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.