Cystic Fibrosis: Living Costs

Debate between Helen Whately and Kerry McCarthy

Thursday 2nd February 2023 Westminster Hall

[The Minister for Social Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Ms Harris. I thank the hon. Member for Strangford (Jim Shannon) for not just securing the debate, but the tone in which he conducted it and his well-established support for the cystic fibrosis community. His continued presence at cystic fibrosis debates over the years has impressed on the Government the vital role that public services play in supporting people with cystic fibrosis, as well as driving home the stark realities of living with the condition. I also thank him for his kind works to me as a Minister in the Department of Health and Social Care.

I pay tribute to all hon. Members who have taken the time to speak in the debate. The hon. Member spoke powerfully about what it is like for people living with cystic fibrosis and the challenges and costs, including the cost of medication, food and energy and the loss of income, drawing on the good work in the Bristol University report, “The Financial Costs of Cystic Fibrosis”, which I have indeed read. I thank my hon. Friend the Member for Ashfield (Lee Anderson), who spoke powerfully from his personal experience of his wife living with cystic fibrosis. He talked about the extra heating and food costs and the need for 4,000 calories a day for somebody with the condition, which practically is expensive to do. He spoke about how it is a 24-hour challenge and, indeed, what the nights are like living with someone with cystic fibrosis. I welcome the optimism he brought to this Chamber as he spoke about some of the improvements to quality of life thanks to medical innovations.

My hon. Friend spoke powerfully about the CF warrior in his constituency—little Amelia Rose Ratcliffe—and what her life and, particularly at the moment, the life of her parents looking after her is like. Again, there are a lot of extra costs and all the extra trips for appointments and to the hospital. It was good to hear that there is free parking at his local hospital. He spoke powerfully about the constant worry for parents and how there are lots of little Amelias and their families all around the country. As a parent myself, I can imagine how worrying it would be for the parents of a child with a condition such as cystic fibrosis.

I think this is the first time that I have spoken in a debate with the hon. Member for Stretford and Urmston (Andrew Western), so I welcome him to Parliament. He spoke about Eva, who is older than Amelia and in school year 11, and about how she has missed a lot of school and the challenges and worries that brings—for instance, in respect of what her life will be like after school and what employment opportunities she will have. In particular, he brought into the conversation the issue of the anxiety that adults and especially young people with cystic fibrosis experience, as well as the broader mental health impact. Those are really important issues for us to discuss.

It was also good to hear from the hon. Members for Rutherglen and Hamilton West (Margaret Ferrier), for Blaydon (Liz Twist) and for Bristol East (Kerry McCarthy), and, of course, from my fellow Front Benchers, the hon. Members for Linlithgow and East Falkirk (Martyn Day) and for Denton and Reddish (Andrew Gwynne). It has been good to have this number of people contributing to a debate on this subject in Parliament.

I wish to recognise the fantastic work undertaken by the Cystic Fibrosis Trust, which advocates on the behalf of people living with cystic fibrosis and their families and continues—very effectively indeed—to bring their needs to the attention of parliamentarians. The work of the trust to help people with the increased financial burdens associated with cystic fibrosis, be it through direct financial assistance or by providing advice and information to those in need, is substantial and should be commended. The trust’s continued support for people with the condition, along with the support provided by other voluntary sector organisations, is invaluable.

During this debate, we have talked and heard about the pressures that face people with cystic fibrosis because of the increased cost of living; indeed, those pressures are set out clearly in the report from the University of Bristol. Although the increased cost of living affects us all, it has been rightly acknowledged by the Members present that the cost of living situation for people with cystic fibrosis is far more acute than the pressures that face most people.

The majority of people with cystic fibrosis will claim at least one form of benefit, with many claiming two or more benefits, and I know how important that money is to those who rely on it. As a country, we will spend around £66 billion this financial year on benefits to support disabled people and people with health conditions. In fact, specific spending on the main disability benefits—personal independence payment, disability living allowance and attendance allowance—is more than £7 billion higher in real terms than it was in 2010. Significant amounts of money are going to those who claim benefits, including disability benefits, but I have clearly heard the conversation today about how life can still be very hard for those with cystic fibrosis who claim benefits.

The Government are committed to helping those with cystic fibrosis who are able to work to do so. Our goal of reducing the disability employment gap remains, and we continue to support disabled people to start, stay and succeed in work. We do this through a range of mechanisms which, particularly for cystic fibrosis, take into consideration the impact of such a condition on someone’s ability to work. For instance, mechanisms include increasing work coach support in jobcentres for people with health conditions who receive universal credit or employment support allowance, and disability employment advisers in jobcentres who offer advice and expertise on how to help disabled people and people with health conditions into work.

For people who are in work, the Disability Confident scheme encourages employers to think differently about disability and health, and to take positive action to address the issues that employees face in the workplace. Also, the information and advice service provides tailored guidance on supporting and managing health and disability in the workplace. In addition, we support Access to Work grants towards the extra costs of working beyond standard reasonable adjustments, to ensure that people such as those with cystic fibrosis who can work have the support that they need to do so.

Several Members spoke about the cost of energy. To help with the rising cost of energy, our energy bills support scheme is delivering a £400 non-repayable Government discount in instalments over six months to help 29 million households with energy bills over the winter. The energy price guarantee, which saves a typical household around £900 this winter, will be extended to April 2024. Also, over the past year there has been extra support for people on means-tested benefits such as universal credit, to help them with the higher energy costs we have been talking about. Sums of £650 were paid out in two payments last summer and November to households in that situation, with an additional £150 for those on disability benefits.

The household support fund, which is £1.5 billion in total, has gone to local authorities to provide support to the most vulnerable people in their communities. Local authorities judge who most needs that help and how best to give it. Local authorities have provided support to help with energy costs, and sometimes specifically to help people whose health needs contribute to their finding it difficult to afford their extra energy costs. The fund was intentionally distributed in such a way as to give local authorities the flexibility to use it most effectively to help their communities and the people they know most need help.

Let me address some of the concerns expressed about the costs directly linked to cystic fibrosis, such as prescription costs and challenges in attending appointments. It is true to say—it has come up this afternoon—that not everyone with cystic fibrosis will qualify for free prescriptions, but there are prescription charge exemptions in place in England to help patients with the greatest need to afford prescriptions. For instance, people with cystic fibrosis who receive benefits may be exempt through the NHS low-income scheme.

Those who have to pay NHS prescription charges and need many prescription items can save money with a prescription prepayment certificate, which allows people to claim as many prescriptions as they need for a set cost. A three-month prescription prepayment certificate, which costs £30.25, or an annual one, which costs just over £108, will save people money if they need four or more items in three months or 12 or more items in 12 months. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 a week.

[Kerry McCarthy]

I understand what the Minister is saying—it is said every time we raise this issue—but the only reason why people with cystic fibrosis are not covered by the rules that apply, say, to people with diabetes is that cystic fibrosis was seen as a childhood disease, and it was thought that people with cystic fibrosis would not live past the age of 16. That is an anomaly. It is good that they can get the season ticket, but they should not be treated like that. If they had survived beyond the age of 16 when the rules were brought in, they would not be treated like that now. Does the Minister therefore agree that it is still unfair?

[Helen Whately]

I absolutely hear the hon. Member’s argument, and similar points were made during the debate. As the Minister with oversight of major conditions, cystic fibrosis is not the only condition about which I have received letters, parliamentary questions and lobbying in general asking for exemptions to prescription charges. We cannot just look at cystic fibrosis in isolation; a similar argument could be made in relation to a number of other conditions. As I have set out, the way the system works is specifically designed to help people on low incomes with the cost of prescriptions and make it more affordable for people who have to get a lot of prescriptions during the course of a year.

Oral Answers to Questions

Debate between Helen Whately and Kerry McCarthy

Tuesday 13th July 2021 Commons Chamber

[The Minister for Care (Helen Whately)]

We recognise how much carers do and the huge demands that caring places on them. We have made carers a priority group for covid-19 testing and vaccination, funded carers’ organisations and asked local authorities to meet their duties to identify and support carers. We have also provided guidance and funding through the £1.5 billion infection control fund to support the reopening of day services.

[Kerry McCarthy]

I have been contacted by a Megan, a young carer in my constituency, and I have been in correspondence with the Minister about the lack of guidance for young carers on the gov.uk website. We got the Government to remove an outdated linked to a Barnardo’s service that had closed at the end of March, but they have not replaced it with anything, which has left a vacuum in where young carers can look for advice and support. Can the Minister ensure that there is adequate, up-to-date information on the gov.uk website and that young carers have somewhere to turn to when they need help and support?

[Helen Whately]

I thank the hon. Lady for her question and her correspondence on this. She makes a very important point and I will make sure of that.

Oral Answers to Questions

Debate between Helen Whately and Kerry McCarthy

Wednesday 13th January 2021 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

What recent discussions she has had with the Secretary of State for Health and Social Care on the development of the new national autism strategy.

[The Minister for Care (Helen Whately)]

I thank the hon. Lady for raising this important issue and congratulate her on all the work that she does for autistic people. We are working across Government and particularly with the Department for Education to develop a new impactful all-age autism strategy. This will set out specific actions to address the significant inequalities that autistic people and their families face.

We aim to publish the strategy in the spring.

[Kerry McCarthy [V]]

I was not really able to hear the Minister’s answer, but there was a report from the Care Quality Commission in October last year that was quite damning in its account of the experiences of people with autism and learning disabilities in mental health facilities. What work is the Minister doing—particularly in terms of the review of the Mental Health Act 2010 that we will hear about later today—to ensure that people with autism are treated sensitively when they end up encountering mental health services and having to spend time as an in-patient?

[Helen Whately]

I know that the report to which the hon. Lady refers, which was commissioned by the Secretary State for Health and Social Care, did indeed have some very serious findings. We absolutely will take action based on that report. We are also working on the Transforming Care agenda to ensure that people with learning disabilities and autism are not inappropriately in in-patient settings. There is, of course, also the reform of the Mental Health Act, which will mean that it should no longer be used for the detention of people with learning disabilities and autism beyond the 28-day period for assessment.