Cystic Fibrosis: Living Costs

Andrew Gwynne Excerpts

Thursday 2nd February 2023 Westminster Hall

[Andrew Gwynne (Denton and Reddish) (Lab)]

It is always a pleasure to respond on behalf of the shadow Health and Social Care team, and to see you in the Chair, Ms Harris, guiding our proceedings. I sincerely thank my hon. Friend for securing this important debate—I know the convention is to call him the hon. Member for Strangford (Jim Shannon), but he is my friend. He always manages to find a way of getting pressing issues such as this one, which are all too often overlooked by this place, discussed on the Floor of the House. I am grateful for that, and for the comprehensive and detailed way in which he set out the case before us. This has been a good debate.

I thank the hon. Members who made short contributions, such as the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) and my hon. Friends the Members for Blaydon (Liz Twist) and for Bristol East (Kerry McCarthy). Coming to the substantial contributions, I sincerely thank the hon. Member for Ashfield (Lee Anderson) for sharing his personal experiences. It is often difficult to do that in this place, and he added a great amount of knowledge, detail and worth to our considerations. I am sure that the Minister will feel the same. On behalf of the whole House, I send our best wishes for the future to him and his wife, and to Amelia and her family. Sharing our constituents’ personal experiences is also important, because we are sent here to advocate for them.

I also thank my hon. Friend the Member for Stretford and Urmston (Andrew Western). He has certainly hit the ground running as a newly elected MP. He is already making eloquent contributions following the by-election, including today on behalf of his constituents, Penny and Eva. In a similar vein to what I said about the hon. Member for Ashfield, it is important that real-life experiences are articulated in these debates.

The cost of living crisis is impacting people right across the country, as we are all too aware with our constituency caseloads. We all hear regularly that many constituents are having to make the difficult choice between putting food on the table or heating their home. It is all too commonplace for constituents to open their energy bills with a feeling of dread in the pit of their stomachs. Many have no idea how they will get through the next week, let alone month.

For those with cystic fibrosis, however, the problems are even more challenging. As many Members highlighted, they are much more likely to be struggling with their finances than the general UK population. They are at a significant social and economic disadvantage. As we have heard, CF is a genetic condition that affects almost 11,000 people in the United Kingdom. People with CF experience, as we heard graphically from the hon. Member for Ashfield, a build-up of sticky mucus in the lungs, digestive system and other organs. It can affect multiple parts of the body, with symptoms including, but not limited to, reduced lung function, increased susceptibility to infection, weakened bones, liver disease, diabetes and more.

Households affected by CF face a median loss of about £564 a month. That financial hit would be extremely difficult in favourable economic circumstances, but in the current financial context it is nothing short of devastating for too many people who live with CF. As the Cystic Fibrosis Trust points out, many people with CF incur a “double-hit” to their finances by having to spend more to keep themselves healthy and being forced to make different decisions about education or employment opportunities.

Jess, an adult living with CF, said:

“Living with CF has always caused my life to be unpredictable, which has cost me financially as well as in many other aspects of my life”.

Jess sums up what many people living with CF know all too well: in almost every aspect of day-to-day living, it is more expensive to be a person with CF.

Energy bills are a prime example. Many people with CF have to use nebulisers, feeding pumps, electric sterilisers and other energy-intensive appliances for their health. That means that the median energy cost for an adult with CF is £26 more than a typical bill. For a child with CF, that climbs to £36 more. I would be interested, then, if the Minister could set out what assessment the Government have made of the current support available to those living with CF.

Furthermore, like Members from across the House—this is not a party political point—I am really concerned that, although energy bills are predicted to rise to an average of £3,000 from April, the Government have still not yet set out their plans to support households beyond that date. Will they explain what is likely to happen, particularly for people with additional costs that they cannot do anything about because of the need for medical assistance? Extra support would benefit people across the country and households affected by CF, which are particularly vulnerable to energy price rises.

I also want to raise the issue of access to benefits with the Minister. I know this is not her direct responsibility, but I am sure she is in dialogue with colleagues in the Department for Work and Pensions. As has been said, disability living allowance and PIP were the most commonly claimed benefits from people living with CF. However, as the Cystic Fibrosis Trust makes clear, a surprising number of those with CF have either been turned down or have not applied for support because they expect to be refused.

CF is a changeable condition. Many people living with it have good days as well as bad days, and that can lead those applying for benefits being unfairly declined or facing stigma in accessing support. What assessment has the Minister made of access to welfare support for people with CF, and are the Government taking any steps to improve access for those with the condition?

Labour has committed to overhauling routes into work for sick or long-term unemployed people and doing away with some of the gruelling reassessments. We have pledged to guarantee extra support for flexible working for those with chronic conditions, and I would like to see that pledge matched by the Government today. It is something that the shadow Front Bench would be willing to support the Minister in pursuing, as she has responsibility for this matter. I appreciate that the Minister works in the Department of Health and Social Care, but she must realise that many of the levers to improve the lives of people with cystic fibrosis sit in other Departments, including the DWP. Will she commit to working cross-departmentally on the issues we have discussed to improve the lives of those living with serious conditions such as CF?

CF is a difficult enough condition to manage without having to face systemic, financial, employment and social barriers, too. The Government need to take the experiences of those living with cystic fibrosis seriously and try to fix the issues we have been discussing. The tools are there for the Government to act. That means ensuring that support is in place to guarantee that those living with acute conditions like cystic fibrosis cannot just make it through the cost of living crisis, but in future can lead lives that are meaningful, joyful and supported by us in this place through the welfare system and employment support. The Government will have our support in making that happen.