Dialysis Care Outcomes

Kenny MacAskill Excerpts

Thursday 19th May 2022 Westminster Hall

[Kenny MacAskill (East Lothian) (Alba)]

It is a pleasure to serve under your chairmanship, Sir George. First, I pay tribute to the hon. Member for Strangford (Jim Shannon) for securing this debate and for putting forward such an eloquent statement, including the passionate and compassionate testimony. There is something about oral testimony. Whether it is as an elected Member or, indeed, a Minister, if we can actually see something, or hear or feel it, that is much more powerful, no matter how good a briefing may come from an individual, a member of our staff, or indeed an able civil servant. The comments regarding Peter Shannon and his family hit home.

I think that we were all aware, even before we were briefed on this issue or became elected Members, that people with kidney and renal disease suffer greatly. It is life threatening. Clearly, once someone is on dialysis, that is a significant issue. Not only is it life threatening if they do not obtain the treatment, but the treatment itself is life changing, not only for the individual—their life circumstances change in deeply restrictive ways, including through a loss of employment, as the hon. Gentleman said—but through its impact on other members of the family. Treatment can require family members to change their employment situations, and it can affect youngsters who perhaps do not get the same parental attention that would be available to others.

The hon. Gentleman eloquently put forward many points that I support and sustain. We are all largely on the same side in the debate. Nobody enters party politics or, indeed, comes to Westminster, to make their constituency worse off or endanger the livelihoods of their constituents. I will make some points on which I have differences with the Government, however. There are Governments in other countries who do not share my political hue or perspective—they are probably closer to right-of-centre than the UK Government—but who have policies that I will suggest later. I want to touch on two aspects of the debate: first, the difficulty people have in obtaining treatment for themselves or their children, and secondly, the difficulties faced by those undergoing home dialysis treatment, who the hon. Gentleman correctly mentioned.

The travel problem is a constituency issue, as the hon. Gentleman said in his speech. A constituent of mine—a Polish woman trying to sustain her life and her family—came to see me because her child requires dialysis treatment. In Scotland, it is difficult enough to get dialysis treatment for adults, but for children it can take place only in Glasgow or Aberdeen. She lives in East Lothian, and taking her child to Glasgow would mean travelling a considerable distance. He cannot go on his own; he has to be taken by his mother or father, who would have to take time off work. That affects the wider family and creates costs.

That is not a matter for the Minister but for the Scottish Health Secretary, and I have written to him and await a reply. At the present moment, treatment is a postcode lottery. Some health boards are particularly generous; others are entirely lacking. For my constituent in Musselburgh, trying to get treatment is financially draining, extremely difficult, and traumatic—not just for her son, but for her whole family. These matters have to be addressed along the road. I have no doubt that similar issues in England must be considered, and the Minister will no doubt consider them.

Home treatment has been worsened by covid—in mental health terms—and by the fuel crisis, which is causing real difficulties. At the moment, there is an entirely spurious euphemism about people “self-disconnecting.” There is no such thing as self-disconnection. People are not saying, “I’m going to save for a holiday in Marbella, so I won’t put my power on”. As is often said, they have to choose between heating or eating.

For people on dialysis, the issue is far worse. It is not simply about access to heating, which is necessary—as the hon. Gentleman said, people feel the cold more when they are ill—but about access to power. Power means that people can charge their mobile phones so that they can call 999 if there is a significant problem; it means that they can wash their clothes in the washing machine if they have to go to the doctor’s or to hospital and want to uphold their decency and values by looking smart and presentable; and it means that they can afford to keep their dialysis machine on when it is ratcheting up the costs. The euphemism of “self-disconnection” is an entire fraud. There are significant issues for those who are on dialysis.

As the hon. Gentleman pointed out, people in deprived areas tend to have treatment elsewhere rather than at home. There is a reason why: most people on prepayment meters are unable to access a dialysis machine. I can understand why restrictions are imposed and why it is difficult, but that is fundamentally wrong. They should be able to access machines. The way to solve the problem is to level the charges for those on prepayment meters—not just the most deprived, but those who live in private tenancies and who have those meters forced on them. At the moment, those on prepayment meters pay a higher standing charge and a higher tariff even though they have lower incomes—that is perverse. There is no technical impediment to power companies levelling the charges, and it could be dealt with. It requires Ofgem to take action and the Government to impose it, so that is my point on prepayment meters.

I subscribe to aspects of work done by other countries, even by those that do not have a left-of-centre position. Other countries bring in social and disability tariffs, so that those who have least or who are sick can be charged at a lower rate. Belgium, for example, operates a system where the third of people with least are charged at a lower rate, and other countries have circumstances where people who receive dialysis can get financial support.

At present, the financial support provided in this country is haphazard and goes nowhere near meeting the costs required to run and operate a dialysis machine. On that basis, there has to be political change and the Minister has the power to provide that. It is not a matter of blaming Ofgem, because Ofgem takes its directions from the Department for Business, Energy and Industrial Strategy. It is those decisions that have to change.

We all agree that we have to provide greater sympathy and mental health support, as well as better access for people to get to treatment centres, but, fundamentally, those being treated at home have to be able to pay for the treatment they require.