Batten Disease: Access to Drugs

Debate between Catherine McKinnell and Caroline Dinenage

Tuesday 16th July 2019 Commons Chamber

[Caroline Dinenage]

I take on board all the comments that you have made, Mr Speaker, and indeed that hon. Members have made. I need to go away and reflect on this. I would like to make some progress with what I feel confident to be able to talk about today, and then, if inspiration does not approach me from anywhere else in this Chamber in the next few moments, I will commit to coming back with a fuller response if that is possible before we break for recess, if that would be acceptable to you, Mr Speaker.

[Catherine McKinnell]

I thank you for your guidance on this issue, Mr Speaker. I wonder whether the Minister would accept that the legal action that is being discussed would be unnecessary if NHS England, the National Institute for Health and Care Excellence and BioMarin got around the table and resolved this issue. On the broader point, on 21 May I and a number of colleagues, including the hon. Member for North East Somerset, met the Secretary of State to discuss this issue. He has since written to me to say that he is

“doing all he can within the legal constraints to resolve this”

situation. I was therefore hoping that the Minister could clarify what exactly that means, and what progress is being made as a result of that meeting and the representations we have made today.

[Caroline Dinenage]

I know that the Secretary of State met the hon. Lady and other Members recently, and this is something that he cares about passionately. We are doing everything we can in the Department of Health and Social Care to try to move the position forward. The hon. Lady is right to say that had this issue been satisfactorily resolved, we would not be having this discussion at all, we would not be talking about legal proceedings and the situation would hopefully be a lot easier to resolve.

I have only a short amount of time left to be able to give some sort of response to my hon. Friend the Member for North East Somerset.

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[Caroline Dinenage]

I do not think it would contravene any legal recommendations if I were to say that if the manufacturer, NHS England and NICE were to get around a table and agree a satisfactory price, there would be no need for the legal challenge. In actual fact, the desperately poorly children we have heard about today would therefore be able to get the treatments that they desperately need.

[Catherine McKinnell]

Does the Minister share my concern that one reason why NICE turned down Brineura is that there is not enough long-term evidence about the drug’s effectiveness? That does prompt the question, which I am sure people at home would wonder about: how can we secure that long-term evidence when the treatment is so new—yet so effective, in my view—but is not even available on the NHS in this country? How do we ever find enough evidence to match the criteria that NICE is looking for?

[Caroline Dinenage]

That is a really good question, and I think that is one reason why NICE is looking again at its systems. It must be possible, because around 80% of new drugs are recommended for NICE approval and approved by NICE. It is clearly possible for new drugs to make it through even when they have not been around for a long enough period to see the very long-term consequences of their impact. It is really important in cases such as this, in which the opportunity—

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[Caroline Dinenage]

Yes, I will come back and make that statement before the House rises for the summer recess, with the correct legal recommendations.

The NICE review of its methods and processes has now begun. That will be quite helpful for some hon. Members who are questioning whether those processes are as they should be. Although I do not think it would not be appropriate for me to pre-empt the review by commenting in detail on its scope, I can assure hon. Members that it will be wide-ranging and will be carried out with full consultation with stakeholders.

My hon. Friend the Member for North East Somerset spoke about access to the new drug Brineura for his constituent Max. NICE is currently developing recommendations for the NHS on the use of Brineura through its highly specialised technologies programme for the evaluation of drugs for the treatment of patients with very rare diseases. It has not yet published that final guidance. I understand that NHS England and NHS Improvement have been in discussions with the manufacturer of Brineura, BioMarin, for some time to seek a deal that would enable NICE to recommend the drug for use on the NHS, but an agreement has unfortunately not been possible so far. As I said at the beginning, NICE’s assessment of Brineura is potentially going to be subject to legal proceedings.

Let me move on to individual funding requests. Where a treatment is not routinely available on the NHS, including where NICE has not yet made a recommendation on its use, NHS clinicians are able to apply for funding through an individual funding request. This can be done when a clinician believes that their patient is clearly different from other patients with the same condition, or where their patient might benefit from the treatment in a different way from other patients.

In the absence of NICE’s final recommendations on Brineura, I am aware that NHS England and NHS Improvement have recently considered an individual funding request for my hon. Friend’s constituent Max that it has unfortunately been unable to support, because he would not be regarded as an exceptional case to existing policy. I understand how devastating that decision will be for Max, his parents and all those involved. However, if my hon. Friend’s constituents and their clinicians think that the process has not been followed correctly, they can ask for a review of the decision within 28 days. If a patient’s situation changes or more clinical evidence becomes available about the effectiveness of a treatment, they may also submit additional information to be considered and discussed.

[Catherine McKinnell]

Does the Minister understand how deeply hurtful the situation is to those families who are receiving this treatment on compassionate grounds from the drug company and how difficult it must be for them to listen to this debate? Not only are the Government seeking to hide behind sub judice rules when in fact they should be giving the answers that those families deserve; they are also sending families round and round, suggesting that they make applications based on individual circumstances and that they appeal decisions, when they just want to care for their very sick children. Is there nothing more that the Minister can offer those families who are listening to this debate?

[Caroline Dinenage]

I completely understand what the hon. Lady says, and I completely agree with her. I would love to be able to solve this problem straightaway and give these children the lifeline they need. Unfortunately, that is not the case today. I have committed to make a statement before the House finishes for recess at the end of next week, so I will come back shortly with all the information I am allowed to give. I really do not want her to think that this in any way suggests that I do not understand how the families must be feeling. I can only begin to imagine how desperate it must be to have such a poorly child.

Children’s Palliative Care

Debate between Catherine McKinnell and Caroline Dinenage

Monday 1st July 2019 Commons Chamber

[Caroline Dinenage]

I thank my hon. Friend for that. She must take some of the credit, because it is her work, along with that of her co-chair of the all-party group, that has helped to secure these strong commitments from NHS England, so I wish to pay tribute to them this evening. But there is more. We know that children’s hospices are not evenly spaced throughout the country, so NHS England has also committed to undertake a needs assessment to understand whether additional investment, nationally or from clinical commissioning groups, is required where palliative care is provided by means other than hospices.

[Catherine McKinnell]

I, too, thank the Minister for this announcement, which is very welcome, but I cannot pass up this opportunity to intervene, when NHS England is in the mode of looking to fund these services. The hon. Member for Sleaford and North Hykeham (Dr Johnson) gave as an example of children with life-limiting conditions those with Batten disease. A family in my constituency have two daughters with Batten disease. It has progressed in one, but the other is receiving totally innovative enzyme treatment that has stemmed any development of the disease. Yet at the moment NHS England is unwilling to fund this treatment for 13 children in England. So I just want to put on record that this is about not only supporting children with life-limiting conditions, but giving them access to the treatment that will prevent them from going down that road if we can.

[Caroline Dinenage]

The hon. Lady has powerfully put her sentiments on the record, and I absolutely with them. In parallel with the announcements that NHS England has made on the much-welcomed investment, it is working to develop commissioning models specifically for children and young people with palliative care needs, to support CCGs. We know it can be difficult for some commissioners to meet the needs of this vulnerable group, and these models will help them overcome the challenge of delivering services for small and geographically spread groups of patients, whose conditions can fluctuate over the course of their lives. Together for Short Lives is involved in this important work, and I also wish to put on record my thanks to it for its continued support.

My hon. Friend mentioned Acorns hospices, which is currently consulting its staff on the closure of one of its children’s hospices at Walsall. I have been made aware that there is a financial aspect to this consultation, but there are other aspects to it, such as a reduction in the number of bed days used by in-patients. As I say, this is a consultation at this stage and I am hoping that the announcement of this money will help to make a difference to its decision.

In “Our Commitment to you for end of life care”, we set out what everyone should expect from their care at the end of life, and the actions being taking to make high quality and personalisation a reality for all in end of life care. The choice commitment is our strategy for end of life care, which, through the NHS mandate, NHS England is responsible for delivering through its national end of life care programme board, with all key system partners and stakeholders, including Together for Short Lives. This presents the best opportunity to continue to deliver the progress we all want to see and make the choice commitment a reality for both adults and children.

Looking to the future, the NHS long-term plan has set out a range of actions to drive improvement in end of life care and deliver the choice commitment. In addition to the £25 million of investment in children’s hospices announced today, the NHS long-term plan has made a number of commitments that will improve palliative and end of life care for children.

[Caroline Dinenage]

As I said at the beginning, my hon. Friend is nothing if not utterly tenacious and passionate in her pursuit of this. I will talk about the short breaks now. She is absolutely right on this; I do not think families are necessarily looking for big long holidays, they just need short breaks, but for those need to be reliable and consistent. People need not to be let down at the last minute. That is the message I am getting loud and clear. Local authorities have a legal duty to commission short breaks, as established by the Breaks for Carers of Disabled Children Regulations 2011. Although the NHS role is not statutory and is a matter for NHS commissioners, the NHS may provide the clinical aspects of care to support such services, if appropriate.

According to the 2018 Together for Short Lives report, 84% of CCGs reported that they commissioned short breaks for children who need palliative care. That is an increase on the support in 2017, when it was 77%, but I recognise that we have much further to go. Parents desperately need short moments of respite and to know that their children will be well cared for at such times. The breaks also need to be reliable, and we will continue to work on that.

[Catherine McKinnell]

I just want to make sure of something. The needs of the child who requires care and support in order for there to be that respite are often too great, meaning that local authorities feel it is not within their remit, yet the clinical needs do not necessarily meet the NHS thresholds, so many families just fall through the cracks in the requirements. That often results in really difficult family situations and sometimes in family breakdown, which is not in anyone’s interest at all. If the Minister can do anything to consider this issue holistically, across the local authority and the health service, to try to bring things together and close the gaps, that will change the lives of so many families up and down the country.

[Caroline Dinenage]

The hon. Lady makes an excellent point with her customary insight. I care deeply about this matter, totally understand what she says and very much recognise the point that she is trying to get across. The problem is that local commissioners are best at designing the local services that best meet the needs of their local populations, but occasionally we find that families fall between the gaps between children’s social care and local health commissioning. I would be happy to continue to meet both co-chairs of the all-party group and Together for Short Lives to look at ways in which the Department of Health and Social Care can help to address the gaps so that people do not fall through them.

I thank my hon. Friend the Member for Sleaford and North Hykeham for securing this debate. I hope she has been reassured by the commitments made on ensuring the future of palliative and end of life care services for children.

Question put and agreed to.

Children with Life-limiting Conditions

Debate between Catherine McKinnell and Caroline Dinenage

Tuesday 29th January 2019 Westminster Hall

[Caroline Dinenage]

Absolutely. The meeting probably would not be with me, because the issue does not fall under my portfolio, but it is really important that the hon. Lady meets the relevant Minister.

The debate has been very broad, and a lot of questions were asked. I will attempt to answer as many as I can, but I commit to writing to hon. Members with all the answers they asked for if I miss any out. Whenever we discuss this issue, we must keep at the back of our minds the powerful point made by the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), despite her throat issues, that at a time of their lives when they are dealing with unimaginable stress and grief, parents should not have to fight for what they need to best care for their children.

The hon. Member for Swansea East (Carolyn Harris) painted a picture of how the world ends when you lose a child. I cannot even begin to imagine that, but it must feel the same to be told that your child may die at a young age. That must, quite simply, be devastating. As the hon. Member for Strangford said, almost 40,000 children and young people aged 19 or under in England live with a life-limiting condition and may need palliative care. Of those, around 1,000 die every year.

As outlined in the NHS long-term plan, we know that children’s palliative and end of life care have not kept pace with the growth in clinical care costs or with inflation. NHS England’s hospice grant programme provides £11 million a year for children’s hospices, which are incredibly valuable. I have spoken before—probably in this room—about my great passion for children’s hospices. That comes from my mum who helped raise money to build Naomi House children’s hospice just outside Winchester, and throughout my twenties she made the whole family partake in a range of humiliating fundraising exercises to raise money for that. I went to visit Naomi House again last year, many years later, and I saw at first hand the incredible, valuable services that it offers, not just for end of life care, but because of its respite and outreach work, which is a lifeline for so many families.

Hon. Members will know the invaluable services offered by children’s hospices, and I was pleased that in the long-term plan additional funding has been made available each year for children’s palliative and end of life care services. I understand the confusion about the different amounts that have been mentioned and issues around that, and Department officials are currently working with NHS England to clarify those numbers and what they mean. I am clear that funding for children’s hospices is vital. We must ensure they get the money they need, and that money must increase from its current levels.

As the hon. Member for Strangford pointed out, there is regional variation in how palliative care is delivered. I know that such care is exceptional in some parts of the country, and many staff up and down the country go above and beyond to ensure that experiences for children with life-limiting conditions, and those at the end of their life, are as good as they can be. We know, however, that there are areas where we need to do considerably more, and NHS England is firmly focused on providing support and challenge to achieve that. Choice at the end of life is a centrepiece of the Government’s drive to improve end of life care, and for choice to be meaningful it needs to be personalised and matched by healthcare services that respond in an effective way that places patients, families and carers at the heart of decision making. We know when we achieve that that we have got it right, but also that we have a long way to go. I pay tribute to the all-party group for children who need palliative care, and charities such as Together for Short Lives, and the work they are doing to take that crusade forward.

[Catherine McKinnell]

I appreciate the commitment made by the Minister that her officials will clarify those figures. Will she also commit to ensuring that children’s hospices do not receive less money as a result of the long-term plan? Can she make that reassuring commitment to everybody watching the debate today?

[Caroline Dinenage]

I know that we are planning to meet next month to discuss this issue in more detail, but my understanding from the announcement in the long-term plan is that there will be an increase in funding for children’s hospices. I would not support a move towards anything other than that, so we are certainly in agreement about the value that children’s hospices offer up and down our country.

In July 2016, “Our commitment to you for end of life care” set out what everyone should expect from care at the end of life, and the actions being taken to make high-quality personalised care a reality for all. NHS England is responsible for delivering that commitment in partnership with key stakeholders through its national end of life care programme board. The hon. Member for Strangford mentioned ensuring that sustainability and transformation partnerships and integrated care systems deliver care in a way that supports their local population. NHS England is already working with Public Health England and the Care Quality Commission to provide bespoke end of life care data and support packs to STP and ICS areas, to help plan for and improve end of life services.

NHS England is developing a new indicator for clinical commissioning groups to measure deaths in hospital after three or more emergency admissions in the final 90 days of life. That sounds like a technical piece of data to collect, but such vital information will help us to understand exactly what care is being delivered, and ensure that we spread best practice and identify areas for improvement.

The hon. Gentleman rightly highlighted the crucial role that leadership and accountability play in commissioning those vital services, and NHS England has and is seeking to improve support for commissioners when funding and delivering children’s end of life care. In April 2017 it made available a new specialist palliative care currency—one for adults and one for children—to support local areas in planning and delivering services, including hospice services. The currency can help local services better understand complexity of care and the investment needed to deliver it. It can be difficult for some commissioners to develop suitable models to meet children’s needs, given that in some geographical areas relatively small numbers are involved. That is why NHS England has established an expert group, which includes Together for Short Lives, to bring together knowledge and expertise in children’s end of life care, consider developing models that are suitable for that incredibly vulnerable group of patients, and set up pilot models of care that will be implemented later this year.

A number of hon. Members mentioned short break services, and access to respite and short breaks is fundamental for many families and carers. Local authorities have a legal duty to commission short breaks, and although the NHS’s role is not statutory but a matter for local commissioners, it may also provide clinical support. Having the reassurance of clinical oversight can often mean the difference between carers taking those much-needed breaks and feeling unable to do so, and it is important that such work is collaborative. A recent report from Together for Short Lives found that 84% of clinical commissioning groups said that they commission short breaks for children who need palliative care—an increase from 77% in 2018. We want to ensure that 100% of clinical commissioning groups make such a contribution so that carers have access to the breaks they need. NHS England provides bespoke data and commissioning support to STP and ICS areas to enable them to plan and deliver effective services, such as short breaks, for children and young people.

Access to and quality of palliative and end of life care goes beyond funding for hospices, and through the long-term plan we are accelerating the roll-out of personal health budgets to give people greater control and choice. We want 200,000 people to benefit from a personal health budget by 2023-24, and that will include things such as provision of bespoke wheelchairs and community-based packages for personal and domestic support. NHS England is expanding the offer of mental health services to people receiving social care support and those receiving specialist or end of life care.

Learning Disabilities Mortality Review

Debate between Catherine McKinnell and Caroline Dinenage

Tuesday 8th May 2018 Commons Chamber

[Caroline Dinenage]

Yes, my hon. Friend is absolutely right. The integration of health and social care services is absolutely vital, and that is why we are so delighted that we have renamed the Department as the Department of Health and Social Care. That has to be more than just a title; it has to be a statement of intent.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

Last October, I secured a Westminster Hall debate on supporting and safeguarding adults with learning disabilities, following the horrendous murder of my constituent, Lee Irving. Following that debate, what reassurance can the Minister give me that one of the major lessons coming out of that case—that families must be involved in the decision making about a person’s care—has been learned?

[Caroline Dinenage]

I thank the hon. Lady for raising that case. It was a truly horrible case. The Mental Capacity Act 2005 is all about making sure that we have care that is centred around the individual, and that parents’, families’ and carers’ thoughts are taken into consideration when making decisions about how we care for people.