Batten Disease: Access to Drugs

Catherine McKinnell Excerpts

Tuesday 16th July 2019 Commons Chamber

[Mr Rees-Mogg]

I completely agree with my hon. Friend.

Generally, I recognise the need for public expenditure constraint. Money always has to come from somewhere; it has to be either taxed or borrowed. However, in a country that spends over £800 billion a year, and £120 billion or whatever it is a year on the national health service, can we not find just over £6 million a year for this small number of children who have a terrible disease that can be held at bay?

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

I very much commend the hon. Gentleman for securing this hugely important and timely debate. Does he share my concern that we seem to be witnessing a bit of a blame game between NHS England, NICE and BioMarin? Does he agree that they just need to get round the table and resolve this issue one way or another, even if it requires the Minister to bring them together and knock some heads together to get them to come to a resolution? The rapid-acting nature of Batten disease means that my constituents Nicole and Jessica Rich and the other children who are affected just do not have the time for this wrangling to carry on.

[Mr Rees-Mogg]

The hon. Lady is absolutely right. The terrible thing is that in the month that has passed since I first raised this matter in the House, Max’s condition will have slightly deteriorated, and in every month that goes on while we are debating this, not just Max but all the children with this condition will go downhill. That is what happens with this disease.

There are questions to be asked about the structure of policy on rare diseases, and about the Government’s response and what powers they have. As I said at the beginning, accountability through this House is of fundamental importance. By law, the Secretary of State still maintains overall responsibility for the provision of healthcare in this country. It is the Secretary of State who is accountable. We cannot make NICE accountable; it has not been structured to be accountable. It does not appear in the Chamber to tell us what it is doing—that is done by second degree, through Ministers. We really need to know what, if any, reserve powers Ministers may have to be able to do something about the situation.

Can something be done? Can a budget exception be provided, so that funds may be made available for these rare diseases? Can something be done, as has been done for cancer treatments, to provide money where exceptionality can be seen? Of course these drugs are expensive: they affect so few people, and the drugs companies will not develop them if they cannot at least make their money back. Can something be done as in other areas, particularly cancer, to ensure that the drugs can be provided? Can the rule changes in 2017 that made it harder to fund rare disease drugs be reviewed and possibly reversed? Since 2017, the financial aspect has become much more significant than it was before.

Although I accept, of course, that there is a need to look at costs, when we are talking about eight-year-old children, we are not talking about a cost for people who only have weeks or months to live, but about a child who could have years of a high quality of life ahead of him. That must be where most of us as taxpayers think it is right to spend money and where we think that the moral case for spending money is extraordinarily strong.

[Catherine McKinnell]

Does the hon. Gentleman share my concern that the impact of rare conditions such as Batten disease is not just felt in the child’s physical health, but in their mental health and the mental health of their wider family? The system for judging what is value for money and how our NHS should spend its money needs to take a much broader approach when calculating the value of these medicines in those circumstances. It needs to get it right.

[Mr Rees-Mogg]

The hon. Lady puts it so well—and it is not just the family, but the community. On Saturday, the village of East Harptree, a small village in North East Somerset, came together for its annual village fête. All the funds raised were to try and help Max. He is at the local primary school, East Harptree Primary School. The week before, they had the school races. All the children had gone back a few yards so that Max could win, for the first and only time in his life, the race at his school. That is such a wonderful example of community. If communities can do that, surely the Government can help too, because it is not just Max and not just his wonderful family who are trying so hard to do the right thing for him. A whole community would be pleased, and would feel it was being taken notice of, if Max were helped—all his schoolfriends and schoolteachers and the whole community in East Harptree.

[Catherine McKinnell]

The hon. Gentleman gives a really powerful example. The whole of the community in Newcastle knows about Nicole and Jessica Rich and is doing everything it can to support them in this journey. This not only affects those two beautiful children; it also affects their family in a huge way, and the whole community.

For that reason, I beg the Minister today to recognise that this is not only about reaching the right decision, but about doing it with urgency. Every day, there is an impact on their deteriorating health, and there is also the impact on the parents of supporting those children with a debilitating condition and living with the agony of not knowing what future lies ahead—whether the medicine that will save their children’s lives will be funded or not.

[Mr Rees-Mogg]

I so agree with the hon. Lady. I am of course primarily talking about Max, my constituent, but to take the drug away from children who are already getting it would be unconscionable. I simply do not believe that any reasonable person—any politician or any administrator—would think that the right thing to do. It is bad enough not to give the drug to a child who could benefit; to withdraw it would be so utterly wrong that I cannot believe that that could happen.

When something can be done, it is hard for it not to be done and for us to allow it not to be done. It is frustrating that it is so hard to change and that there seems to be nobody who can decide it. Everyone one talks to says it is not up to them. NICE is bound by its guidelines, NHS England is bound by NICE, and the Secretary of State is bound by the legal interpretation of what the Health and Social Care Act 2012 provides, but none of that is good enough. We need action. Ultimately, it is Ministers, through Parliament, who are able to act.

Let me finish with what Max’s father, Simon Sewart, who has been doing so much to look after his son, wrote:

“I have always understood that life is no fairy tale with a happy ending, but when you learn that your beautiful child has a disease, as horrific as Batten Disease, your world changes forever and your heart is broken.

NICE announced, just 24 hours after Max’s diagnosis, that the first ever treatment for CLN2 Batten Disease will not be funded.

At a time when you should be taking care of your child, your other children, and enjoying precious time together as a family, you instead find yourself spending all of your time writing emails and letters, speaking to journalists and TV news programmes, communicating with your MP and with doctors in other countries where the ERT is available.

Expending all of your energy in fighting the extraordinary decision by NICE and NHSE. And all the time, you see your child decline, day by day. And all the time, you just want to expend your energy on them, on holding them, on playing with them, on laughing and smiling with them, on running with them, on walking with them, on talking with them, on looking around at the world with them; on all these things. With them.

This double-whammy is almost too much to bear. Reverse your decision NICE and let my family be.”

Is that not what we all want for Max and his family? He has this terrible disease. It is not a disease that he can ever be cured of, but if he gets this treatment, he could have a higher-quality life and his family would be peacefully with him, enjoying his company for the years that remain to him. Please can the Minister do something about this?

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[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

Catherine McKinnell Excerpts

Monday 1st July 2019 Commons Chamber

[Dr Johnson]

I thank my hon. Friend for his intervention. He is indeed right. The demand for children’s hospice care is rising because there has been an increase in the number of children with life-limiting conditions and because those children are living longer and therefore require care for a longer period. The cost of providing that care is also increasing at a rate faster than inflation and faster than the money that the sector receives, which means that in some areas the money received has fallen in real terms.

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

The hon. Lady and I work together closely on this issue as co-chairs of the all-party parliamentary group for children who need palliative care, and we hosted an incredibly moving discussion during Children’s Hospice Week at which we heard really powerful stories from parents who had recently lost children. I am sure she appreciates my concern that the hospice care that children receive is often needed not just at the end of their lives but throughout their lives in order to give them the best life possible in the time that they have, and that it is not funded on a sustainable footing. Children’s hospices must not be left to rely on the ability of local areas to fundraise for them. They must be put on a sustainable financial footing to give the children and their families the support that they need.

[Dr Johnson]

The hon. Lady is right. In fact, NHS and local authority funding represents just 21% nationally of the money that children’s hospices need. The rest is raised by charities, but for some hospices in less affluent areas, raising the additional money that is required can be very challenging.

I welcome the fact that the Government have made their end of life care choice commitment, which is really clear about the care support choices that children should have. In our roles as co-chairs of the all-party parliamentary group for children who need palliative care, the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) and I carried out an inquiry last year to find out the extent to which this commitment was being met. We found that Ministers were at risk of failing to meet that commitment because of funding, as described, and because the quality of palliative care that children and families can receive is variable, depending on the area in which the child lives.

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[Catherine McKinnell]

The hon. Lady is being generous with her time and is making an excellent speech. While she rightly makes the case for children’s hospices, does she agree that they are not the only vital care support that children and their families need? They also need care at home, which is often provided by charities such as the Rainbow Trust. It is a hugely important service, but CCGs and local authorities are too often not commissioning it, and one can only assume that that is due to funding restraints. Does she agree that local authorities and CCGs should be incentivised and supported to fund and make such services available?

[Dr Johnson]

I thank the hon. Lady for her intervention.

Turning to those who do not receive valuable hospice care, as a doctor I have seen too many families in crisis, struggling to cope with patchy provision or the lack of hospice or home care or respite. As children’s hospices are frequently set up by charities, their locations across the country have not been planned, so some families find themselves too far away from services to be able to use them. I want NHS England to review the provision of services to ensure that care is no longer patchy and no longer dependent on where a child lives. The hospices that I have spoken to have asked me to make the Minister and NHS England aware of how the funding cake is split. Hospices—both the well funded and the less well funded—feel that funding should be disbursed more fairly based on clinical need, so an examination of that situation would be helpful.

Another area on which I would be grateful for the Minister’s response is respite care or short breaks. For most people, an evening out requires a quick call to a friend or relative. If Mr Johnson and I want to go out for dinner, I just need to ask someone to come to our house for a few hours. I do not need to spend weeks planning to take the children away for several nights or a week at a time. I can pop out for a curry for two hours. For families whose children have many complex medical and physical needs, things are much more difficult. Short break provision is often patchy and inflexible. I might want a babysitter so that I can attend my brother’s wedding, but for someone whose child has complex needs, if the weekend on which respite care is available is not the same weekend, that may not be much help. Sadly, having got all the plans in place, respite care is all too often cancelled at short notice. In my time as a doctor, I have seen families pitch up at the hospital with their child, who has remained in an acute hospital bed for the weekend simply because, where else can they go?

I would like an army of help for families, not a patchwork system. I want each family to have the guarantee of short breaks and the opportunity to access trained care assistants who can be booked to come to the family home, like any other family can have if they want to go out for a meal or attend a sibling’s school play—Mr Speaker, you mentioned that your daughter Jemima was in a play recently, and I am sure that it went extremely well. Children with complex needs may have siblings, and the parents will want to be able to attend their plays. The Government should provide such a service through the NHS, and there should be a set amount of guaranteed free home respite care time per year, perhaps with additional subsidised capacity above that amount.

I know the Minister understands how important children’s palliative care is to children and families, and I know how hard she has worked and pushed for this issue in her Department. I know she understands the need for the Department to work with NHS England to review this provision and how it is spread across the country, and I hope she will be able to assist with the provision of respite care breaks so that these very vulnerable families find it easier to have short breaks and access to childcare, like any other family and any of us would want. Most importantly, I ask the Government to make sure that NHS England now honours the original announcement by recommitting to protecting the children’s hospice grant for the long term and by increasing it to the £25 million a year that is needed.

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[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.

Oral Answers to Questions

Catherine McKinnell Excerpts

Tuesday 18th June 2019 Commons Chamber

[Matt Hancock]

A most enthusiastic commitment! My hon. Friend has led on this agenda and driven it, because it is all about using technology to save lives. The report that he mentions is optimistic about the power of using data better to ensure that people can live longer.

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

On new technology and saving lives, I met the Secretary of State last month to discuss making the innovative enzyme replacement therapy Brineura— the only treatment available for Batten disease—available on the NHS urgently. I have heard nothing since that meeting, and the wait is agonising for the families, so what will he do urgently to make this life-saving treatment available to children in England?

[Matt Hancock]

I had an incredibly moving meeting with the hon. Lady, my hon. Friend the Member for North East Somerset (Mr Rees-Mogg) and others, and some of the families and children who have Batten disease. I have since met the chief executive of the NHS. The decision on the availability of the drug in question is, of course, one for the National Institute for Health and Care Excellence and NHS England, but I have had those meetings and I continue to make the case.

Cystic Fibrosis Drugs: Orkambi

Catherine McKinnell Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

My hon. Friend is absolutely right. Before I led a similar debate for the Petitions Committee roughly this time last year, I went to the Cystic Fibrosis Trust, as I did this morning, where I met and spoke to a lot of parents whose children are suffering, as he has mentioned. This morning, I met a number of adult sufferers, who I will speak further about in a minute. One of them, who is 43, described the disease—this is harsh, especially for any sufferers watching—as his lungs filling up and effectively drowning. That is pertinent to me, because my father died of mesothelioma 30 years ago, after a year of suffering. This man is 43; I cannot imagine that suffering. Early treatment for children, however, stops that build-up in the first place and allows them to keep their lung capacity higher for longer, so they can have a proper standard of living.

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

I suspect that my fellow Petitions Committee member shares my concern that families are being put in the terrible position of having not only to deal with a devastating illness and diagnosis, but fight for a treatment that they know is available and that other people across Europe and across the world are receiving. Whether it is cystic fibrosis, Batten disease or phenylketonuria, or PKU, it is wrong that families are wasting their precious energy, which they would like to channel into looking after their children, into fighting for a treatment that could solve many of those medical issues.

[Paul Scully]

I totally agree with the hon. Lady. It is frustrating to look at access around the world; there is even an interim solution in Scotland. It would be interesting to hear from the Minister about how that may pan out. Scotland has given interim access, including for compassionate use, and further access to some sufferers who can use Orkambi with a view to reporting back in August.

It is disappointing to find that people living with CF, in their ingenuity, have had to resort to looking at a buyers’ club. The Vertex drug is patent pending in Argentina, so another company is making a copy that can be sourced for £18,000 a patient—still a lot of money—rather than £104,000. That £18,000 comes out of their pockets, however, which defeats the idea of the NHS being free at the point of need.

British Sign Language Users: Access to NHS Services

Catherine McKinnell Excerpts

Wednesday 15th May 2019 Westminster Hall

[Joan Ryan (in the Chair)]

I draw hon. Members’ attention to the fact that our proceedings are being made accessible to people who are deaf or hearing impaired. The interpreters in the Chamber are using British Sign Language, and the debate will be broadcast on Parliament TV with live subtitles and British Sign Language interpretation.

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

I beg to move,

That this House has considered access to NHS services for British Sign Language users.

It is a pleasure to serve under your chairmanship this afternoon, Ms Ryan. I am pleased that we have the BSL interpreters here in the Chamber for the debate and that it will also be covered by simultaneous live BSL interpretation and subtitling on the parliamentlive.tv footage.

I have been trying to secure a debate on this important subject for several months, because for some time now I have been raising the issues with the Government and a number of other organisations. This afternoon’s debate is timely as well, taking place just days after Deaf Awareness Week, which was from 6 to 12 May. As I am sure hon. Members and the Minister are aware, Deaf Awareness Week aims to increase awareness and challenge perceptions of hearing loss and deafness, promote positive aspects of deafness, promote social inclusion and raise awareness of the huge range of organisations throughout the country that support deaf people and their family and friends. That includes the ITV SignPost team, which offers content production, access services and training from their base in Gateshead.

Sadly, given the subject of the debate, there appears to be no reference to Deaf Awareness Week on the websites of the Department of Health and Social Care, NHS England or indeed the Department for Work and Pensions, the Department with overall responsibility for cross-Government disability issues. I am pleased that many local NHS organisations, including the Newcastle Hospitals NHS Foundation Trust, have marked Deaf Awareness Week. The key thrust of my argument, however, is that all public bodies should be aware of and provide for the needs of deaf people, including BSL users, not just one week of the year but 52 weeks of the year. As I will highlight, on far too many occasions that is certainly not happening.

According to the British Deaf Association, the UK has about 151,000 users of British Sign Language, of whom 87,000 are deaf. That first figure does not include professional BSL users, such as interpreters and translators, unless they use it at home. As the BDA has described:

“Sign languages are fully functional and expressive languages; at the same time they differ profoundly from spoken languages. BSL is a visual-gestural language with distinctive grammar using handshapes, facial expressions, gestures and body language to convey meaning.”

Like spoken languages, sign language is not international and is not derived from the spoken language of a country. For example, the UK, Ireland and the US all have entirely separate sign languages, despite speaking the language of English in common.

In 1988, the European Parliament passed a resolution on sign languages, proposing that every member state should recognise its own national sign language as the official language of deaf people in that country, which on 18 March 2003 the British Government did. In 2009, the UK Government went on to ratify the UN convention on the rights of persons with disabilities, which states that Governments must uphold rights by

“Accepting and facilitating the use of sign languages...in official interactions…and…Recognising and promoting the use of sign languages.”

BSL, however, still does not have any legal or protected language status, despite many deaf organisations campaigning for that since the early 1980s. Back in 2014, the British Deaf Association published a detailed discussion paper and highlighted the

“policy apathy about the shocking levels of linguistic exclusion we face as individuals and as a community”,

and,

“the shocking extent to which Deaf people are denied their civil rights.”

The paper itself highlighted the good practice that takes place in Finland, New Zealand, Austria and Hungary and set out why our Equality Act 2010 was not working as intended for deaf people—an issue to which I will return. Of course, since that paper was published, the British Sign Language (Scotland) Act 2015 has been passed, requiring the Scottish Government to create a BSL national plan for Scotland to set out their strategy for promoting BSL. That was produced in 2017. The Act also required all other listed bodies such as local authorities to establish their own BSL plans.

I look forward to hearing from the Minister whether her Government have made, or intend to make, any progress towards providing BSL with legal status on a UK-wide level. I recognise, however, that she might have difficulty in doing so, given that it remains somewhat unclear just who has overarching responsibility for promoting and protecting BSL within and across Government.

[John Howell (Henley) (Con)]

The hon. Lady mentioned the European Union, but another organisation in Europe, the Council of Europe, covers 47 countries. It has already looked at the issue and suggested that countries need to emphasise their BSL equivalents and undertake training to ensure that that is available. Has she seen that report, and does she think it is something that we might like to support?

[Catherine McKinnell]

It is an important report, obviously, but I am interested to hear whether the Government have considered it, what their response is and how that would fit with their overall requirements to better meet our obligations on such issues in this country.

In preparing for this afternoon’s debate, I of course looked back to the 30 November 2017 debate on deafness and hearing loss secured by my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), who is present in the Chamber today. In that debate, the Parliamentary Under-Secretary of State for Health commented:

“It is not entirely clear to me which Department would lead on legal recognition of British Sign Language, which is the problem that so many people have referred to today. I am sympathetic to the calls for strengthening the role of British Sign Language. We want to see as many people trained and providing support as possible. At this time, Her Majesty’s Government are not yet convinced that the way to achieve that is through legislation.”—[Official Report, 30 November 2017; Vol. 632, c. 236WH.]

I therefore look forward to hearing from the Minister whether that position has changed. In the light of some of the issues to which I will refer, I hope it has.

For some time I have been working with a number of local deaf organisations on the significant challenges faced by far too many deaf people in accessing services, information and support. Those organisations include the Newcastle-based charity Becoming Visible, but also Deaflink North East, in particular since I attended a hustings that it organised for the local deaf community ahead of the 2015 general election. At the time, the overwhelming sense of frustration felt by many deaf people about continually having to demand, to challenge, or to fight to access even basic services that most of us take for granted was palpable.

Since then, I have worked to do what I can to make myself accessible to deaf people in Newcastle North as their Member of Parliament, including by launching a BSL section on my website with the support of Deaflink North East, to whom I am extremely grateful. The page includes a subtitled video of a person using BSL to explain, in accessible language, my role as a Member of Parliament, including the types of issues I can help constituents with. Perhaps most importantly, it also makes it clear that should any BSL user from Newcastle North wish to attend one of my surgeries, Parliament can fund a BSL interpreter to facilitate that. In response, the manager of Deaflink, Heidi Jobling, commented:

“We are really pleased that Catherine has taken this positive step towards including the BSL communities. It is so difficult for BSL users to access any type of service and to have our local MP leading the way sends out a clear message, not only to the BSL community but to other providers and organisations, that being accessible is important.”

But this is not about ticking a box and moving on. I hope it is a clear demonstration of my determination to improve accessibility for deaf people wherever I can, including through this debate.

To mark Deaf Awareness Week, the chief executive of the National Deaf Children’s Society wrote a blog entitled “Unsure How to Communicate With Deaf People? Here’s Some Advice”. It revealed the findings of her charity’s recent survey that more than half of British adults do not feel confident talking to deaf people, while one in five has been nervous when speaking to a deaf person, simply because they do not know what to do. The piece opened with a really powerful description:

“Imagine if you were with a group of friends and one of them said something funny, which you didn’t quite catch. Now imagine, while everyone else is laughing, you ask them to repeat it, only to be met with the response ‘Oh, it doesn’t matter.’ What if this happened to you again and again, in lots of different situations? For many deaf people, this is far from hypothetical; it’s real life.”

That scenario is bad enough in social situations, but the constant inability to communicate or be communicated with in one’s own language—and therefore access timely, appropriate and important healthcare, support or information—is particularly serious, as it can be a matter of life or death.

My constituent Ellen O’Sullivan, who is deaf, recently contacted me about the tragic death of a young man from Essex, who ended his life last month. It is reported that, having been assessed as having severe mental health problems and requiring urgent attention, the man was referred to mainstream counselling with the provision of a BSL interpreter, instead of the specialist deaf-focused therapy requested by his GP. Following his death, the specialist counselling service Deaf4Deaf set up a crowdfunding page to establish the Daniel MJ Webster Deaf Mental Health fund, with a target of raising £50,000 to provide six emergency counselling sessions to 278 deaf people with severe mental ill health in the parts of England where the NHS does not fund that. Such support is vital because, as the crowdfunding page highlights:

“The NHS regions who do not offer BSL counsellors use an interpreter with a counsellor. In general hearing counsellors do not understand the specific issues faced by Deaf people.

Interpreted counselling involves a counsellor and interpreter in the room with the Deaf person as they talk about deeply personal issues. Many Deaf people give up after a few sessions because communication becomes difficult.

There is an increasing number of Deaf people asking for NHS funded Deaf focused BSL counselling, they report suicidal thoughts. Many of these people have tried interpreted counselling which was not suitable for them.”

The establishment of this fund in Daniel MJ Webster’s memory is extremely powerful, and it is highly relevant that I raise his case during Mental Health Awareness Week. Does the Minister seriously think it is acceptable that the crowdfunding campaign should have to take place?

On being informed that I had secured this debate, my constituent Ellen O’Sullivan took the trouble to share her wider concerns about access to NHS services for BSL users and to canvass the views of many of her deaf friends. I will share some of their experiences. One commented:

“I am trying to be independent but I am unable to do that because to make an appointment you have to ring up, which obviously I can’t do because I am deaf. So, I have to rely on my mother to ring them or make or cancel the appointment. The doctors do have a website to book an appointment online, but when I need to see a doctor as an emergency on the day, I can’t book an appointment online because the appointments are not available to book until after a week or two.

I do understand that the NHS are trying to save money but as a deaf person I think it is important that doctors and hospitals book an interpreter to be with a patient the whole time while they’re at hospital or the doctors, in case something happens. For example, my partner who is also deaf, had a nose operation. It was a day operation and the hospital only booked an interpreter for 2 hours, but he also needs an interpreter when he wakes up, so he knows what is happening.”

Another explained:

“I am sick of going to the doctor to make an appointment and when they send letters regarding the appointment and the dates I can’t make due to work, I have to get my Mam to ring them and rearrange the time or cancel. I would rather email or text because I hate bothering her to ring up all the time.”

Another of Ellen’s friends commented:

“I don’t want to ask my Mam to make an appointment when I’m 30, I would like to be independent now. We need an app for quick easy access to book GP appointments.”

Another stated:

“I was in hospital for an operation and when I woke up the nurse came up to me and was talking to me, so I told her I was deaf but she was still talking to me! The staff gave me paper and pencil after my operation but I couldn’t write because I was hooked up to drips. I need an interpreter with me all the time!”

Other concerns raised by Ellen and her friends include the use of BSL interpreters who are not fully qualified, and the constant stress and anxiety that deaf people feel before and during medical appointments because they do not know whether their communication needs will be met.

[John Howell]

The hon. Lady is making an excellent case. I wonder whether she is aware of a number of NHS trusts that have tried to get around the problem, initially at least, by having television screens showing a BSL interpreter who helps the patient to get their appointment. That is a very good start, but it illustrates her point that it is only the start, because the person needs to be there throughout the whole process. Is the hon. Lady aware of that experiment?

[Catherine McKinnell]

The hon. Gentleman raises a point that I was about to make. I said that an app should be available for contacting a doctor’s surgery—I think most doctor’s surgeries would agree. We need to explore the use of technology to make accessing NHS services a reality for deaf people—texts, apps, Skype or FaceTime—and urgently to invest much more in making sure that where there are technological solutions, we harness them to their greatest effect as soon as possible. All NHS staff, whether administrative or medical, need to understand deaf people’s communication needs and NHS buildings must be accessible, with clear plain English signage. Those issues are reflected in the experience of many deaf people in my region.

The Newcastle-based charity Deaflink North East shared the recent outcomes of work that it is undertaking on behalf of Northumbria Healthcare NHS Foundation Trust to identify the issues and barriers that BSL users face, which Deaflink states are common right across the country. They include deaf people regularly being told to telephone to book a BSL interpreter; continually having to remind GPs and hospitals that they need a BSL interpreter and it not being clear whose responsibility it is to book one, despite their communication needs repeatedly being flagged; appointments not being long enough for BSL interpretation; interpreters not having appointments and people being sent home after waiting for a very long time; being asked to sign forms without fully understanding what they mean; being sent large amounts of complex pre and post-operation information, with only telephone numbers provided if they require further advice; staff being generally unaware about deaf people’s communication needs, such as that they need to look up when speaking or should not shout out a deaf person’s name when they are waiting in reception; and deaf people simply not understanding what treatment they are receiving and having no means of finding out, and the likelihood that they are, therefore, being treated without informed consent.

Those communication issues clearly become more frightening in an emergency situation. Last year, deaf blogger Liam O’Dell highlighted concerning findings from freedom of information requests he had made to hospital and ambulance trusts about the BSL interpretation services they provide—or, rather, often do not provide. His article opened:

“Distressed, in pain, in an unfamiliar environment with no means to communicate.

It’s a feeling of isolation one would usually associate with your typical horror movie, but if the right provisions aren’t in place, it can be a real-life nightmare for the 50,000 deaf people in the UK that use British Sign Language as their first language.”

Of course, this issue is by no means restricted to NHS services. The Minister may be aware that, in September last year, I wrote to the Minister for Disabled People after being contacted by Deaflink, which was due to lose its core funding from the Newcastle Gateshead clinical commissioning group in what appears to have been a cost-saving measure. I wrote to the Minister for Disabled People because I felt the wide-ranging concerns Deaflink had raised should be addressed by the Department with overall responsibility for cross-Government disability issues: the Department for Work and Pensions. However, my letter was transferred to the Department of Health and Social Care and then seemingly got lost. I received a response from the Minister in January. That again begs the question of which Department has specific responsibility for promoting BSL and standing up for its users. If the Minister is unable to provide an answer today, I suggest that the Government need urgently to resolve that.

Deaflink’s manager, Heidi Jobling, told me that after more than a decade of working with BSL communities in the north-east, she has seen

“the statutory services available to BSL users getting progressively worse. There are always exceptions, but it is widely acknowledged that, when leaving school, the average reading age of a BSL user is 8-9 years old. The majority of the hearing world do not understand that many BSL users do not feel comfortable or able to communicate in written English. Lip reading is difficult, exhausting and at best about 50% accurate. Yet, these are the fall back communication methods when no interpreter is present.”

She went on to ask how BSL users are supposed to access public health information about things such as joining a gym, stopping smoking, joining a weight loss group, safe amounts of alcohol or preventing diabetes—or, indeed, about how BSL users can access the benefits system, which now is almost entirely online. I dealt with a case in which a leading high street optician did not provide or fund a BSL interpreter for a deaf constituent, believing that offering a double-length appointment and speaking more slowly would be sufficient.

The letter I received from Deaflink highlighted serious concerns about the impact of almost a decade of austerity on BSL users. For example, the adult services sensory team has closed, all BSL-using social workers have been removed, and support to the majority of BSL users has been withdrawn following punitive local authority funding cuts. Heidi Jobling concluded:

“I am writing because I am concerned that, in times of austerity, the needs of the BSL community are the easiest to overlook.”

I find that statement deeply depressing.

I am, of course, acutely aware that the enormous challenges BSL users face in accessing what most people would consider to be everyday services are not restricted to the public sector. Indeed, the Treasury Committee, of which I am a member, highlighted only this week the difficulties that far too many people with accessibility requirements face in engaging with financial institutions and services. That certainly includes BSL users. One of the recommendations we made in our report was that the Equality and Human Rights Commission needs more resources to enforce the Equality Act 2010.

That brings me to my final concern. In response to the concerns I raised on behalf of Deaflink, the Minister emphasised:

“NHS organisations should provide interpretation services to all patients requiring them, including users of BSL Providing communication support to service users is driven by the requirement to comply with relevant legislation, including the Equality Act 2010 and the Human Rights Act 1998, and supporting guidance. This makes it imperative for organisations to provide language and communications support to ensure that patients are able to communicate effectively and appropriately with clinicians and other health service professionals.”

She went on to highlight that

“non-compliant organisations risk complaints and legal challenges, as well as patient safety and other implications.”

Given all the concerns I have highlighted, does the Minister really think the current legislation is sufficient to ensure that BSL users have their communication needs met across the NHS, or will she consider introducing a BSL Act along the lines of the one in Scotland? Given the difficulties that BSL users have in accessing many NHS services in the first place, just how easy does she think it would be for them to make a complaint about those services or to find out anything about the complaints process?

The fact that Deaflink is undertaking the work I mentioned with the Northumbria Healthcare NHS Trust and, to a lesser extent, the Newcastle upon Tyne Hospitals NHS Trust is really positive. Is the Minister confident that all NHS services are taking steps to conduct and then act on similar work, or will she ask NHS England to properly investigate the level of deaf awareness in those services and their accessibility for BSL users? I make a gentle plea to her not to make reference to induction loops or technology for hearing loss. Although those things are extremely important, this debate is about accessibility to NHS services for BSL users specifically.

In conclusion, does the Minister really think it is appropriate to expect adult BSL users to have continually to rely on friends and family—often their parents—to access healthcare and treatment or to discuss private medical information? Is it really acceptable for BSL users to have continually to challenge, demand and fight for access to NHS services that most of us take for granted, or to face delays to their treatment because their communication needs simply have not been recognised and met? That is not a situation that any of us would tolerate, so why on earth should deaf people have to do so in 2019, almost a decade after the Equality Act became law?

--- Later in debate ---

[John Mc Nally (Falkirk) (SNP)]

It is always a pleasure to serve under your chairmanship, Ms Ryan. I, too, congratulate the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) on securing this debate today following national Deaf Awareness Week. Her initiatives in Newcastle are very worthy; she clearly cares passionately. I add my congratulations to the thought given in having BSL interpreters and signers here today. That was really good thinking. As always, it is a pleasure to follow the hon. Member for Strangford (Jim Shannon) and other Members who have spoken today.

Every day, people with hearing loss get on with work and family life while dealing with all the challenges that that brings. It is difficult to imagine what it is like to cope with a job using public transport, as well as coping with shopping and meeting your child’s teacher, when basic communication, which the rest of us take for granted, does not come easily. Almost 9 million citizens in the UK, including 50,000 children and 758,000 people in Scotland, have some degree of hearing loss, as have I. At least 24,000 use British Sign Language as their main form of communication. They are a large and important part of our community, and they need us to be more aware.

Access to NHS services is an important improvement that we can make to the lives of those in our deaf community. To support people who use British Sign Language, as mentioned earlier, NHS Scotland has created information in BSL for a range of health topics, including accessing NHS services in Scotland.

Scotland was the first country in the UK to legislate for BSL to achieve legal status. The British Sign Language (Scotland) Act 2015, passed unanimously by the Scottish Parliament, promotes the use of British Sign Language and made provision for the preparation and publication of the British Sign Language national plan for Scotland, which we now have. The BSL national plan sets out 70 actions that Ministers will take to improve the lives of people who use sign language, backed by £1.3 million of public funding.

Under the plan, BSL users will have access to the information and services that they need to live active, healthy lives and to make informed choices at every stage of their lives. The national plan’s health, mental health and wellbeing actions include, among other things, publishing a schedule for making all screening and immunisation information accessible in BSL; increasing the availability of accurate and relevant health and social care information in BSL; developing a learning resource for health and social care staff to raise awareness of sign language and deaf culture; and working with partners to deliver and evaluate two training programmes aimed at supporting BSL English interpreters to work within the health sector, with a view to informing a longer-term approach.

NHS Greater Glasgow and Clyde has appointed a health improvement practitioner to support mental health in the deaf community, which will help raise mental health awareness and empower that community, allowing them better access to services. In the wider community within my own Falkirk constituency, I have surgeries every month at a wonderful place called the Forth Valley Sensory Centre, which is run by volunteers. I can recommend its coffee and square sausage. People with hearing loss are welcome to come along. Everyone is welcome, by the way, if they like square sausage.

[Catherine McKinnell]

The Minister is not familiar with the concept of square sausage.

[John Mc Nally]

Many people are not familiar with the concept of square sausage. I tried to introduce it some time ago when I first came down here; it was refused by the catering staff, but I shall redouble my efforts.

The centre is a place where people with hearing loss or visual difficulties can access quality services, advice and equipment that helps them to be as independent as possible. Practical support is there for the deaf community at all stages in their lives. In fact, my mother-in-law, Mrs Chalmers, and my own mother, Rosa, made use of the services in the not-too-distant past. Young people looking for work can access advice on job seeking and training. It is also a thriving social hub, holding a range activities and giving folk a chance to chat, try new skills and have fun. It was the first of its kind in the UK and has proven to be an absolutely invaluable resource to the community.

As with all language skills, it is good to teach communication to the young. We see successful examples in some children's television programmes, using a system of signs and symbols called Makaton. It is picked up by all young viewers, not just the deaf community. The more who know some of the skills, the better. It helps us talk to each other at the earliest stages.

I want to draw attention to the inspiring “I’d like to teach the world to sign”, an initiative known as Hands of the World, co-ordinated by the remarkable Sharon Tonner-Saunders of the University of Dundee. She brings music and sign language together across the globe. Some 40 countries are participating. It is a great example of horizontal communication integration, and I ask everyone to Google it and have a look.

The Scottish Government have a plan for primary schools called the 1+2 language plan, which requires every child of primary school age to have experience of their native language, whatever it may be, and of two additional languages—they could be French, Mandarin or British Sign Language. The Scottish Qualifications Authority qualification in BSL is being developed and SCQF levels 5 and 6 will be available from autumn 2019. The UK Government have not yet committed to introducing a GCSE BSL qualification. Rather, they will consider introducing one before 2022, but we hope that action will be taken sooner.

We want to make Scotland the best place in the world for BSL users to live, work and visit. A start has been made, but the efforts must continue. I hope the same thing happens here in Westminster, so let us keep talking—and, of course, signing.

--- Later in debate ---

[Catherine McKinnell]

I must begin by apologising for the fact that, in my enthusiasm to set out this debate at the beginning, I did not welcome the Minister to her new post or acknowledge that she has stepped in to this debate at short notice. It is often the way in Parliament, when two issues come up in two different places at the same time. I thank her for her response today.

I also thank everyone who has contributed to the debate, which has been incredibly constructive. It has highlighted that there is some good practice, but still an awful lot of work to do. I know that much of that work is taking place within the all-party parliamentary group, and I commend my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) on the tireless work that he and his group do on this matter.

I thank the hon. Member for Strangford (Jim Shannon) for his positive contribution to the debate and the SNP Front-Bench spokesperson, who managed to get a reference to Lorne sausage into his remarkable contribution. I studied in Edinburgh, so I am very familiar with the square sausage concept.

In all seriousness, while the Minister has given some positive feedback, there is still a question about who in Government is responsible for this matter. Who is the champion within Government? Who will take this on? I have no doubt about the Minister’s sincerity in taking on the points raised in this debate, but it would be good to know who has responsibility in Government for delivering on this, and I would be grateful if we could get a clear answer to that from the Government in response to this debate.

I must also raise a concern with one of the statistics that the Minister used in her response. She referred to there being 24,000 people who have British Sign Language as their first language. That is a disputed figure because it comes from the 2011 census, in which British Sign Language users were not able to properly participate, due to their inability to access the census in the way that those not having British Sign Language as their first language were able to. Their figures for users of British Sign Language are that 50,000 people have it as their first language and that 87,000 people in total use it. I just put that on the record, because it affects a large number of people, not to mention their families and friends and those around them.

As we were talking, I was reminded of another experience that somebody told me about, which has driven a lot of my passion in this area. It was quite a disturbing story: a gentleman went to the hospital with his father as the interpreter for a medical consultation to get the results of some tests. When they received a diagnosis of cancer, the son was so upset by the news that he left the consultation room, because he could not interpret it for his father. That to me is unforgivable. It is not how our NHS services should be. I therefore implore the Minister to do everything she can to champion this issue, both in the Department of Health and Social Care and across Government.

Question put and agreed to.

Resolved,

That this House has considered access to NHS services for British Sign Language users.

Oral Answers to Questions

Catherine McKinnell Excerpts

Tuesday 26th March 2019 Commons Chamber

[Matt Hancock]

My hon. Friend’s constituent is absolutely right about raising awareness of the issue and the need for these drugs. I know the impact that cystic fibrosis can have on people and of the hope that these drugs will save lives. We have made a significant offer to the pharmaceutical company, Vertex, to allow these drugs to be provided in the UK, and I very much hope we can come to an agreement.

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

On NICE decision making, my young constituents Nicole and Jessica Rich have the life-limiting rare condition Batten disease. Last month, NICE turned down a proven treatment for the condition after a year of deliberation. I and several cross-party colleagues wrote to the Secretary of State to ask if we could discuss this urgent matter, but we received a reply from the Under-Secretary of State for Health and Social Care (Baroness Blackwood), saying that she could not meet us because of diary commitments. This is insulting. Will the Secretary of State meet us to discuss this urgent issue?

[Matt Hancock]

Yes, of course I will. I understand exactly where that process has got to. It concerns a different drug from the one in the question, but it is also a very important consideration for a number of people.

Children with Life-limiting Conditions

Catherine McKinnell Excerpts

Tuesday 29th January 2019 Westminster Hall

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

I am delighted that the hon. Member for Strangford (Jim Shannon) secured this debate on an issue that is so important for so many children and families across the country. It goes to the very heart of the work done by the APPG for children who need palliative care, of which I am vice-chair, alongside the chair, the hon. Member for Sleaford and North Hykeham (Dr Johnson).

Babies, children and young people with life-limiting and life-threatening conditions rely on a range of social care services provided by a variety of statutory and voluntary organisations such as short breaks, practical assistance at home, home adaptations and support to access travel and leisure activities. A good example of one such provider, which celebrated its 15th birthday this year, is St Oswald’s Hospice in Newcastle. It provides residential short breaks and care to babies, children and young adults. Up to six children and young adults can stay at St Oswald’s at any one time, in a beautiful, relaxed, home-from-home environment. Indeed, one mother said about the hospice:

“Having respite at St Oswald’s for a couple of nights a month helped to give me a break. While I was doing all the medical care for my son, I couldn’t be a mum. Being at St Oswald’s gave me time to step back and just enjoy playing with him and having fun.”

Seriously ill children and their families across the country need short breaks and the respite provided by skilled, highly trusted people who can meet the child’s often complex health needs. It might only be for a few hours, or overnight for a few days at a time, but those short breaks are vital to help parents and siblings manage the immense stress and 24/7 pressure that a child with a life-limiting condition can bring. The evidence suggests that such respite care helps to support children and their family’s physical and mental health, and mitigates the risk of parental relationships breaking down.

Local authorities of course have a legal duty to provide short breaks for disabled children and their families, to be planned and funded jointly by local councils and the NHS. A Government-commissioned review of funding arrangements for palliative care made it clear in 2011 that that duty must include respite care for the carers and families of children requiring palliative care. Despite that, however, the charity Together for Short Lives found that too many CCGs and local authorities in England fail to plan and fund short breaks. More than one in five local authorities do not commission short breaks for children with life-limiting and life-threatening conditions, despite having a legal duty to do so, although 84% of CCGs reported that they commission short breaks for children who need palliative care.

Furthermore, the Disabled Children’s Partnership, of which Together for Short Lives is a member, has gathered increasing evidence of cuts to services for disabled children. Is it any wonder that that is taking place? The Local Government Association estimated that children’s services face a £3.1 billion funding gap by 2025, just to maintain existing levels of service. Given such findings, I shall be grateful if the Minister confirms in her response how she holds sustainability and transformation partnerships, integrated care systems, CCGs and local authorities to account for the way in which they plan and fund short breaks.

I am also keen to highlight the importance of the provision of short breaks to all families who receive them, not only those families with children who need palliative care, but those with disabled children whose conditions can be life-limiting as well. I was able to witness that on Friday, when I visited the excellent Alan Shearer Centre in Lemington in my constituency. It provides specialist respite services in a specially adapted environment. One of the key concerns expressed to me at the centre was about how the level of respite care support that disabled children and their families receive can be halved when a person’s condition has not changed at all—the only thing that has changed is their age. Many families described that as feeling as if the rug has been pulled from under their feet.

I also want to highlight the work of the Rainbow Trust, which provides vital support at home for so many families, including in Newcastle. Will it be possible for the recently announced funding of £25 million for palliative and end-of-life care to be used to provide that emotional and life-affirming support for such families? Children with life-limiting and life-threatening conditions face enough challenges without the added stress of not having the support they need.

--- Later in debate ---

[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.

Phenylketonuria: Treatment and Support

Catherine McKinnell Excerpts

Tuesday 26th June 2018 Westminster Hall

[Liz Twist]

I agree. There is incredible strain on parents—and of course on people with the disease, but we must not forget about the parents.

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

I commend both my hon. Friend for securing the debate, and the many parents and families who work to raise the issue. She is right to highlight how challenging the condition can be for children, particularly in adolescence. A constituent told me that her daughter asked whether, for her 18th birthday, she could eat a pizza in a restaurant—seemingly a normal activity for a teenager, but a clear challenge for such children, who want to fit in with their peers.

[Liz Twist]

My hon. Friend is right, and I want to touch on that issue.

As well as having to have bread specially baked with prescribed flour, people with PKU can have no cheese, eggs or dairy products. Even some vegetables, such as cauliflower, are problematic, and so are potatoes, so there can be no chips or crisps. The daily intake of food needs to be monitored constantly. Imagine how that must be for a child at school who just wants to join in with classmates, or for young people who want to go out and socialise with friends—perhaps to go for a pizza, as my hon. Friend mentioned—and get on with their life. Everything must be measured and calculated to make sure that the appropriate level of protein for the child or adult with PKU is not exceeded.

Let us not forget that the condition is lifelong, and adults, too, must restrict their intake of protein. On top of all that I have described, both children and adults must take a protein supplement. I and other MPs have had the chance to try it, courtesy of our friends at the NSPKU, and it is not a pleasant experience. That puts additional pressure on parents, who often struggle to get their children to take the supplements, which they really need, three times a day. Making sure a child has the right diet, including when parents are not around to control it, and trying to make food interesting, often by starting from scratch with basic low-protein foods, is a minefield.

NHS Long-Term Plan

Catherine McKinnell Excerpts

Monday 18th June 2018 Commons Chamber

[Mr Hunt]

My hon. Friend asks a very smart question. The truth is that no healthcare system anywhere in the world, faced with our demographic challenge, would ever feel it had enough money unless it transformed its model of care to one based on prevention rather than cure. That is why public health and the social care system are absolutely critical. One of the big lessons that we need to learn with this new funding is to spend it in a way that brings down the long-term rate of growth in demand for hospital services. That is the only way in which we can make it work.

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

World-leading childhood cancer research and treatment take place in Newcastle, but those leading that research are clear that there is no sight of a Brexit dividend, given the loss of EU staff and the uncertainty hanging over intra-EU collaboration and EU funding. Rather than peddling Brexit mythology, will the Secretary of State take on board those very genuine and very serious concerns?

[Mr Hunt]

We have taken on the concerns of everyone in the NHS. Whether someone agrees with Brexit or the Brexit dividend, the Government are making a commitment for a £20 billion annual increase in the NHS budget in five years’ time. I hope that will help people in Newcastle and everywhere else in the country.

Learning Disabilities Mortality Review

Catherine McKinnell Excerpts

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.