Batten Disease

Debate between Seema Kennedy and Chris Bryant

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

I pay tribute to my hon. Friend for all the work she has done as a clinician. I can only say again—I know this is very disappointing for the House—that we have to rely on the NICE process to be independent. I hear what the House is saying about some people having doubts about the process, but, again, it is under review. NICE is internationally respected, and it has been going for 20 years. Yes, these are exceptionally difficult cases, but this is why, as custodians of NHS funds, we have to be very careful, because every pound we spend on one drug is a pound we cannot spend on another. I hear what my hon. Friend says about this being a life-changing drug, and I hope that BioMarin, NHSE and NICE will, and we would urge them to, carry on with their negotiations.

[Chris Bryant (Rhondda) (Lab)]

There can be very few things as painful for a parent as knowing, once their child has been diagnosed, that there is potential treatment out there that may make a radical difference to their life, and it feels as though some bureaucrats—whether or not they are medical bureaucrats—are saying no. These little things in my hand, which would not have been prescribed for me if I had gone to the doctor a year ago, now cost £7,000 a month to the NHS, and I am delighted that I am able to receive them. However, I do want to make sure we have a proper system to ensure, for the most rare conditions, that there really is a possibility of making things available.

There may be only three dozen cases in the UK at the moment, which means there are probably about 900 in Europe, and if we include the Commonwealth, probably several thousand more. Why do we not have Governments in the world sitting round the table together with people from the pharmaceutical companies, who are not the baddies in this—these are the people, I think including the hon. Member for North East Somerset (Mr Rees-Mogg), whose investment made these pills available for me, in part; investment in these pharmaceutical companies is a good thing—to make sure that more of these rare—disease conditions can be treated?

[Seema Kennedy]

We are determined to improve treatments for people living with rare diseases. As the hon. Gentleman pointed out, they have to be treated differently because fewer people are affected by them. We have the rare diseases strategy, and we are trying to use genomics better to diagnose and treat diseases. We are trying to be the first health service to put genomics into day-to-day health delivery, which will enable us to diagnose and treat diseases such as Batten more quickly. We have care co-ordinators for patients with rare diseases and we are trying to ensure that those who live to adulthood are cared for better, but what the hon. Gentleman said about having an international approach is valid.

Non-invasive Precision Cancer Therapies

Debate between Seema Kennedy and Chris Bryant

Thursday 18th July 2019 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

I want to begin by thanking the hon. Member for Easington (Grahame Morris) for introducing the debate and all Members who have spoken today, particularly the hon. Member for Blackburn (Kate Hollern), who spoke movingly about her late partner, John. His example lives on through his two beautiful daughters—my beautiful cousins—who, too, have dedicated their lives to public service. I am happy to reassure all Members that I am very happy to meet the all-party group—fingers crossed—and if I fail to address any of the points made today, I will try to address them at that meeting.

Cancer is a priority for this Government, and we have got survival rates up over the last 10 years, but there is a lot more to do. In the long-term plan, we state our aim to have 55,000 more people surviving cancer for five years by 2028. Four in 10 NHS cancer patients are treated with radiotherapy, so clearly radiotherapy is a really important part of the mix. I did not know about that until I met members of the APPG. I want to thank them for the manifesto that they presented to me, which I have read with interest and am happy to respond to.

NHS England announced a £130 million fund, which the hon. Member for Easington mentioned, to start a programme of modernising LINACs and giving patients access to leading-edge technology, regardless of geography. I will come on to the specific point raised by the hon. Member for Westmorland and Lonsdale (Tim Farron), because we share Rosemere as a cancer centre.

Since 2016, we have seen more than 80 machines either upgraded or replaced, with the aim of giving cancer patients access to the latest technology, regardless of where they live. The long-term plan specifically promises

“Faster, smarter and effective radiotherapy”,

with an aim of providing curative treatment, with fewer side effects and shorter waiting times.

Members mentioned the facilities at the Christie Hospital. Some of my constituents go there as well. The good thing is that previously some people had to leave the country, but at least now people are able to be treated in this country. The first treatment was last December. Work continues on the University College London Hospitals proton beam therapy centre, which we hope will be opened next year.

[Chris Bryant]

I commend the Minister for everything she has said, but it is slightly easier to put new kit in and build new buildings than it is to develop new staff. The biggest difficulty is with the number of radiologists and the whole staffing element. I wonder whether she could co-operate with colleagues in Wales, because this is a UK-wide issue.

Acquired Brain Injury

Debate between Seema Kennedy and Chris Bryant

Tuesday 2nd July 2019 Westminster Hall

[Seema Kennedy]

I thank the hon. Gentleman for raising that point. I was talking to another colleague who had a brain injury just last year, and she said exactly the same thing. That was not in A&E; it was at a GP practice. There are of course training modules for GPs to access, but debates such as this one and my conversations with NHS England can only help in raising awareness. I thank the hon. Gentleman for bringing that point to my attention.

To return to the audit, its authors estimate that current provision caters for 40% of those who need the services, so there is a lot more to do. On capacity, the audit made some recommendations, including that trauma centres should review their processes and ensure that standards for rehabilitation provision and availability are met, and that commissioners should consider opportunities for development of specialist rehab capacity, both for in-patient and community-based services—a point that hon. Members have raised. These are important points. Although we only had this debate two months ago, I am glad that the hon. Member for Rhondda has raised the subject again. I will discuss with NHS England what it is thinking, what it is doing on the audit and what the next steps are. We need to impress on it the importance of bed provision.

The majority of rehab care is commissioned and managed locally and there are guidelines produced by NHS England, such as the principles and expectations for good adult rehabilitation, which describe what good rehabilitation care looks like. There is additional guidance that covers both adults and children.

Many hon. Members mentioned neuro-rehabilitation for children, and I know that NHS England is aware that there is variability in the provision for children. Best practice guidance was published in 2016, but there is always more to be done. I will take the points away and speak to NHS England. We are looking at how we can educate people on foetal alcohol syndrome, and I am happy to report back to the House on that.

The hon. Member for Newport West raised a specific issue about speech and language therapists and physiotherapists. I very much agree that we need a joined-up approach to care and I am concerned to hear that there is a gap. Members can make representations to NHS England on that. I know the situation is different in Wales, but I would be very happy if the hon. Lady would keep me informed.

The hon. Member for Rhondda raised the injury cost recovery scheme. Again, that is a matter for the DWP and I will be pressing ministerial colleagues to respond on that point. That scheme allows for the recovery of costs for providing treatment to an injured person where that person has made a successful personal injury claim against a third party. It recovers funds from insurance companies and pays into the NHS or hospital ambulance services. The current cap is around £53,000, renewed annually in line with inflation. I will follow up with more detail—the hon. Gentleman looks slightly sceptical.

[Chris Bryant]

I do.

[Seema Kennedy]

I have found it is always good to be sceptical in this place.

The NHS long-term plan was announced in January this year. There are some key actions designed to improve the care, treatment and support of people with long-term conditions, such as ABI. Community services, which play a crucial role in helping people with long-term conditions such as brain injury, remain as independent and well supported as possible and are to receive significant investment. The long-term plan set out £4.5 billion of new investment in primary and community care, including for expanded community multidisciplinary teams, providing rapid targeted support to those identified as having the greatest risks, including those with long-term health conditions.

There is also the comprehensive model of personalised care, which includes self-care, care planning, personal health budgets and social prescribing, and which we hope will reach 2.5 million people by 2023-24.