Huntington’s Disease

Debate between Philip Dunne and Hilary Benn

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn]

I say to my hon. Friend, which he is on this occasion, that I am grateful for his attendance today and I agree with every point he has made. I will discuss research towards the end of my speech.

Young people who grow up in the shadow of Huntington’s face daunting choices about genetic testing and whether to start a family. Should a young person tell a new partner about the condition? When should they tell their partner? How will the partner react? Many young people care for relatives while worrying that they will get the disease themselves. A Huntington’s family member put it like this:

“Huntington’s is a thief that slowly steals your body, energy, health, family, friends and the person you used to be.”

Last year, a community survey undertaken as part of the Huntington’s Disease Alliance UK and Ireland Family Matters campaign—that is quite a title—found that 98% of carers felt that Huntington’s had negatively affected their loved one’s emotional wellbeing; 88% said the disease had changed their relationship forever; and 70% went so far as to say that the impact had been either extremely difficult or life ruining, saying, “It has ruined our lives.”

The disease has a huge effect on family finances and on the ability to work of the person and those who care for them. Sufferers eventually cannot hold down a job, their carer may have to give up their job to look after them, and all the while the bills mount. Income support and financial assistance to meet the cost of equipment and home adaptations is available, but it is limited and difficult to access. That is particularly the case for someone with Huntington’s who does not yet display physical symptoms, and is therefore incorrectly believed not to be symptomatic and not entitled to financial support. That means that people who display only the less visible symptoms—say, mental health or cognitive ones—cannot get the help despite their debilitating effect. That cannot be right.

[Philip Dunne (Ludlow) (Con)]

I add my congratulations from the Government side to the right hon. Gentleman on securing this debate and raising awareness of this appalling condition, and on his very powerful speech. He is talking about the support services available to the families and victims of this disease; because there is no national guidance, that is now a matter for the individual integrated care boards, which have replaced clinical commissioning groups. Does he agree that one of the outcomes of his securing this debate might be that the Minister commits to at least consider encouraging the National Institute for Health and Care Excellence to establish national guidelines to ensure consistency of support throughout the country?

[Hilary Benn]

I am extremely grateful to the right hon. Gentleman for making that point; he anticipates my argument exactly. I and many other people think that is exactly what ought to happen for the very reasons he set out.

What needs to be done and how can the Minister help? That is why we are here today. First, we have to raise awareness of the impact of the disease and the suffering of those with it and their families. By acknowledging what it is and talking about it, we can help families who all too often choose the path of silence and shame because they do not want to talk about it to anybody else. We should say with one voice that no one should have to carry this burden alone.

Secondly, families need more support, including financial help and better care. There is some wonderful expertise in hospitals and a number of centres of excellence throughout the United Kingdom, including the Huntington’s Disease Centre at University College London, but outside those specialist centres it is a different story. At the moment, it is hit or miss; it was put to me recently that it is more miss than hit in areas without specialist support. Social care is of course vital to help those with Huntington’s to manage day-to-day life. The cost of private care for someone with Huntington’s can amount to thousands of pounds a week—who can afford that? Some councils provide specialist care homes, but not all.

Let us begin by having a care co-ordinator—a Huntington’s disease specialist—in every community to help to identify and keep in regular contact with Huntington’s families in their area and guide them through the range of support that they need to meet their requirements. They would also help to improve understanding of the disease on the part of other health and social care professionals. It is hugely complex, and how it presents itself and the sheer scale of support that sufferers require are much misunderstood.

Environment Bill

Debate between Philip Dunne and Hilary Benn

Report stage & Report stage: House of Commons
Tuesday 26th January 2021 Commons Chamber

[Hilary Benn (Leeds Central) (Lab) [V]]

I wish to speak to new clause 5 on the state of nature target.

There are few things that can lift our spirits as much as time spent with nature. Who does not feel a sense of awe and wonder at the astonishing biodiversity of our landscape, its creatures and its plants. As well as ensuring that that same sense of awe and wonder can be enjoyed by future generations, it should be self-preservation, frankly, that urges us to confront the threat of biodiversity and habitat loss. We should have respect for the soil from which we came—the soil that has given us everything that we can see around us: food; fuel; raw materials; medicines; and the ability to capture carbo. It is the soil to which we will, one day, all return—a reminder of our place in the natural order of things.

The truth is that we can no longer take all this for granted. Why? It is because we are destroying our natural world at an alarming rate. In the words of the Minister’s own Department:

“Much of England’s wildlife-rich habitat has been lost over the last century…and there has been widespread species loss.”

The latest state of nature report records a decline of 13% in the abundance of UK species since 1970. Some 15% of UK species are now endangered, including the red squirrel, the water vole, the ghost orchid, and the meadow clary. The number of moths has decreased significantly in the past 50 years and a third of British wild bees and hoverflies are in decline. A total of 97% of our wildflower meadows have been lost since the 1930s. This is a crisis caused by agricultural practices, pollution, urbanisation, habitat loss and climate change, and it requires action, and that is what this new clause seeks to do.

I welcome the Government’s commitment to binding targets, but I think that it can be strengthened to make a good Bill better by including a target to halt and begin to reverse the decline of habitats and species by 2030. That should not be too difficult in principle for the Minister, because this is exactly what the United Kingdom called for in drawing up the leaders’ pledge for nature, which commits to reversing biodiversity loss by 2030. But, of course, to reverse loss, one must first halt it. The problem is that the Bill’s timetable for setting targets does not fit in with the 2030 biodiversity pledge, so the new clause would place a requirement on Ministers to draw up, before the Conference of the Parties later on this year, a 2030 state of nature target to halt and begin to reverse the decline in species and habitats and to set out a plan to do so, including how the target would be measured. It would need to cover the abundance of species, their risk of extinction and the extent and condition of habitats, bearing in mind that widely accepted and reliable sets of indicators already exist to enable us to assess these things.

I accept that the target is ambitious, but if we are not going to be ambitious now, when will we be ambitious for the state of nature? It is not as if we do not know what works to bring about change for the better. We do. We just need a lot more of it. The truth is this: we have always known that the natural environment sustains our souls, but we have now come to understand that it also sustains our very existence. That is why it matters and that is why we should do now what we know in our hearts to be right. I hope the House will vote for the new clause.

[Philip Dunne (Ludlow) (Con) [V]]

I am pleased to be able to make a brief contribution to this important debate. It is a great relief to see the Bill come back to this House, but equally it is a great disappointment to learn that it will be back just for today and we will have to wait until the next parliamentary Session begins after Easter for the second allocated day. When the Minister responds to the debate, will she give some indication that she intends to ensure that the Bill receives Royal Assent as soon as possible and that procedures in the Lords conclude before the summer recess? We must go into the COP26 conference in November with clarity that this ground-breaking piece of legislation is on the statute book.

I wish to speak about two aspects of the Bill, the first of which is the Office for Environmental Protection. I am delighted to welcome the Minister’s announcement today that the OEP headquarters will be in Worcester in the west midlands, near my constituency. Worcester is, of course, on the River Severn, which is the largest river in the country and has recently been in flood through my constituency. The whole Severn catchment area requires considerable attention and will get greater focus thanks to Dame Glenys Stacey’s presence at the headquarters from time to time, in her new role.

Alongside the EFRA Committee, the Environmental Audit Committee did pre-legislative scrutiny of the Bill, and we called for a greater degree of independence for the OEP. Having met Dame Glenys at our pre-appointment hearing in December, we took some comfort from our opinion that she is the right person to lead the organisation, but we are concerned that she has sufficient budget to recruit the number of people required and the experts she needs, and to reflect the OEP’s responsibilities in helping to deliver the 25-year plan.

When the Environmental Audit Committee did pre-legislative scrutiny, we were also concerned about the environmental improvement plans. We felt that the OEP should advise the Government on the establishment of targets, as was the case under the previous regulatory regime through the European Commission. We welcome the fact that targets are enshrined in the Bill but think it important that the body that will have part of the responsibility to monitor compliance with those targets is also involved in setting them. We would very much like to see confirmation from the Minister that the date for establishing the environmental targets can be confirmed with a statement of intent ahead of COP26.

The second aspect I wish to speak about is amendment 28, tabled by my hon. Friend the Member for Gloucester (Richard Graham). It would require the Government to include in the environmental plan steps to improve people’s enjoyment of the natural environment. As part of our inquiry into biodiversity and ecosystems, my Committee has repeatedly heard that central to restoring our greatly depleted natural environment—about which we have heard from other speakers—is building a better relationship between people and nature. It was called for in the Glover review; we would like to see it enshrined in the Bill and urge the Government to support amendment 28.