HIV and World AIDS Day

Thangam Debbonaire Excerpts

Thursday 29th November 2018 Commons Chamber

[Emma Dent Coad (Kensington) (Lab)]

I would like to commend all those who have spoken, and particularly my hon. Friend the Member for Brighton, Kemptown (Lloyd Russell-Moyle) for his bravery in speaking out in this place. I am sure his speech will be heard around the country.

As a graduate of the 1980s London club scene, I know that I had a narrow escape from contracting HIV. I remember the stories in the early ’80s coming from San Francisco about people dying from minor ailments such as flu. It was originally thought to be something to do with taking too much amyl nitrite, or poppers. Eventually the virus was identified, but it was too late for some. Quite a few of my friends became ill, and we had many funerals in the mid-‘80s.

I remember the London Lighthouse project opening just down the road from my house, and Diana, Princess of Wales, came to open it. She did a huge amount to disperse the stigma. We will never forget the photograph of her holding hands with an HIV/AIDS sufferer, which made people think again about how we contract AIDS and showed pure compassion for people who were ill.

I was careful, but before I had my children, I had an HIV test. The results took an agonising two weeks. I was fine. I know that people diagnosed with HIV now live long and healthy lives with the treatment currently available, but I hear anecdotally that, because of that, some people are not being sufficiently careful with their health. Two weeks ago, I took the test again in my local hospital, having been asked to do so as part of the campaign. It now takes two minutes—you get the result immediately. Nobody needs to risk contracting HIV, but if anybody does, I recommend that they spend those two minutes to save their lives and those of their loved ones.

[Thangam Debbonaire (Bristol West) (Lab)]

I want to add my support for the campaign that my hon. Friend mentioned. I too did that. I think those working for the Terrence Higgins Trust referred to it as “pricking the finger”, or some quite naughty expression, when it suggested that I could show that it is not that difficult and does not take that long, and there is counselling and support around it. I recommend that any Member who has not already taken the plunge does so and shows HIV/AIDS the finger. I thank her for raising that.

[Emma Dent Coad]

Absolutely. I recommend that everybody does so. It literally takes two minutes.

I would like to finish by saying that, as regards ending the stigma, my hon. Friend the Member for Brighton, Kemptown has made a very powerful statement. This is your Diana moment.

Paediatric Cancers of the Central Nervous System

Thangam Debbonaire Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore]

I agree entirely with my hon. Friend. It is such an important part of the recovery that families go through. That a child has cancer is in itself a huge trauma. What comes next is so important, and mental health for both the child and the family cannot be forgotten. This again underlines the life-changing effects of cancers such as AT/RT on a child. It will in all likelihood impact on every aspect of their life.

There is a great deal of positive work happening in this House. I would like to pay tribute to my hon. Friend the Member for Bristol West (Thangam Debbonaire) and her colleagues on the all-party group on children, teenagers and young adults with cancer, who recently held an inquiry into patient experiences of childhood cancers, the findings of which were published this year. After discussing the inquiry with my hon. Friend, I would like to thank the Minister for the positive contribution he made to it. I ask him and the Secretary of State to look at the report’s recommendations. Many are comparatively inexpensive and would make a huge difference to the children and their families who find themselves in this situation. I appeal to the Minister to update the House on his response to the all-party group’s findings.

[Thangam Debbonaire (Bristol West) (Lab)]

I thank my hon. Friend for giving way and for the very kind tribute he paid to the all-party group for its inquiry. Many of the panel members are in the House today. I would just like to add my support to what he has just asked of the Minister. Does my hon. Friend agree that it would be good if the Government could commit to greater education and awareness? Although it is rare, the signs and symptoms of cancer in children need to be picked up early. The earlier they are picked up, the more likely it is that treatment is successful.

[Chris Elmore]

I entirely agree with my hon. Friend. I again pay tribute to her and her leadership not just on childhood cancer but on cancer generally. She is a true heroine of the cause and we are extremely grateful to have her in this House. It is clear that there is positive work being undertaken on this issue, but it has to be said that we can do more, much more, to help to tackle this disease.

Members across the House will remember when our dearly missed friend, the late Baroness Jowell, spoke so movingly, just days before Cian passed away last January, about the need to work much harder to make brain tumour research more effective. Tessa stressed the need to support the Eliminate Cancer Initiative to improve the chances of tackling this rare illness internationally. The creation of a clinical trial network around the world, an increase in the use of active trials, and the use of a global database would help to improve research and patient care. As Tessa so rightly said, through sharing knowledge across borders, and thereby at a local level across medical governance structures, we will be best placed to advance our knowledge of the most difficult and rare forms of cancers, including cancers of the central nervous system.

Making that happen will involve further investment in research into specific tumours such as AT/RT, and international collaboration to ensure that we have the best minds and the most innovative technology working on the most difficult of challenges. I believe the UK Government can be doing more to facilitate that. When Ministers visit other countries abroad, more often than not the two principal reasons for the trip are to further international trade or promote international security, both of which are of course vital. However, it is my view that in discussions with our foreign counterparts the issue of international research must rise up the agenda if we are to have any hope of accelerating our efforts in this area.

Autism

Thangam Debbonaire Excerpts

Thursday 29th March 2018 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

It is truly a pleasure to follow the right hon. Member for Harlow (Robert Halfon), who made an informed and inspiring speech. I also salute the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) for her inspiring leadership and for securing this debate.

My constituency team has put making the world an autism-friendly place at the heart of what we do. We have held an autism-specific constituency surgery, and we encourage other MPs to do the same. We have run a roundtable for employers, and I speak to businesses about what they can do to increase access to jobs for people with autism. We work closely with the National Autistic Society and local organisations such as the Bristol Autism Spectrum Service, SEND a Welcome, and Autism Independence.

[Kerry McCarthy (Bristol East) (Lab)]

My hon. Friend and neighbour has set a wonderful example in Bristol of how we can work with autism services. I will hold my first autism-friendly surgery next Friday in Bristol with the help of the same organisations she mentioned, and I encourage other MPs to see whether they can do the same.

[Thangam Debbonaire]

I am delighted that my hon. Friend is following the example of Bristol West in Bristol East. I have a member of staff who is allocated to lead for me on autism, and we are pushing the council and cultural institutions to work towards the National Autistic Society autism-friendly award. We support children with autism and their parents to get the educational support they need, and we do that because we believe that people on the autistic spectrum should be able to participate fully in our social, cultural, economic and public lives. We believe that all aspects of our lives are better when autistic people are included, and that is true for neurotypical people, as well as for autistic people and their families.

However, too many autistic people are excluded. Too many—far too many, as the right hon. Member for Chesham and Amersham knows—feel excluded, unwelcome, or unable to participate in the world around them as it is. They therefore feel isolated and lonely, and that is bad for us all. It is worst, of course, for children and adults with autism who experience that loneliness. New information from the National Autistic Society estimates that autistic people are four times as likely to be lonely as the general public. Four out of five autistic people who responded to the NAS survey said that they felt lonely and socially isolated some of the time. That is shocking and upsetting.

Such isolation is also bad for the parents of children with autism, who told the National Autistic Society that they fear going out because of public ignorance, or they have experienced being judged because of the behaviour of their child—some hon. Members have already mentioned that, in particular the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan), who spoke so movingly. Such isolation is also bad for the rest of us, because we lose out on the untapped potential that autistic people have to offer as friends, colleagues, participants in civic society, and leaders. Loneliness hurts. Loneliness hurts health, and it keeps too many autistic people from fulfilling their potential.

The Jo Cox Commission on Loneliness has done sterling work on this issue, and recently, the hon. Member for Chatham and Aylesford (Tracey Crouch) was charged with taking on the Government’s loneliness strategy. As they, and the all-party group on loneliness recognise, leaving people to loneliness diminishes all of our humanity. The survey by the National Autistic Society found that 55% of autistic adults want help with social skills, but only 10% actually receive such help; 53% would like employment support, but only 10% receive it; and 70% of autistic adults told the NAS that with more support they would feel less isolated.

Autistic adults experience significant under-employment—only 16% are in full-time work, and a further 16% are in part-time employment. Of the remainder who are not employed, nearly four out of five want to work. Most of us get our daily social interaction from work, and chronic unemployment increases autistic people’s loneliness, as well as keeping them on low incomes and making it harder for them to pursue other interests or travel to meet up with friends, thereby becoming less lonely. A lack of understanding by employers, educational institutions and others is often behind such under-employment and unemployment. I do not wish to repeat what other hon. Members have said, but I refer those listening to the debate to those earlier remarks.

I welcome the appointment of a Minister with responsibility for loneliness, who will be committed to developing a strategy, measurements, and funding for activities to prevent loneliness. Given the high risk of loneliness among autistic people and the parents of autistic children, may I ask the Minister to do everything she can to ensure that the loneliness strategy attends specifically to the needs of autistic people? I further ask her to urge all her colleagues to consult people with autism on that strategy.

Will the Minister tell the House what the Government are doing to help public awareness of autism, and to help and assist employers to review, and if necessary change, their recruitment procedures? We should encourage public and private organisations to make their spaces truly autism friendly and, as I have said before in this place, perhaps we should start by doing everything we can to make our buildings here on the estate, and our working practices—that will be a challenge for me—more autism friendly, perhaps by thinking about the noises and interventions that we sometimes make.

[Martin Whitfield]

Does my hon. Friend agree that autistic-friendly solutions in no way exclude non-autistic people?

[Thangam Debbonaire]

Exactly. My hon. Friend virtually predicted what I was about to say because we would all benefit from a more autism-friendly country. I will do my best to finish well under time, and taking interventions may impact on other people’s time.

We can all help to reduce loneliness for people with autism and the parents of children with autism. Autistic people and their families experience loneliness as a result of things that we can change. Let us all go from this place today determined to lead that change. We are leaders in our communities, so let us lead the change to make the UK truly autism friendly. Let us start today.

Cancer Strategy

Thangam Debbonaire Excerpts

Thursday 22nd February 2018 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

It is a great honour to follow the hon. Member for Dumfries and Galloway (Mr Jack), who spoke so passionately and knowledgeably for better understanding, treatment and diagnosis of blood cancer.

Like everyone in the House, I could speak about many aspects of cancer, including my own experience. I could speak about the very moving speech made by Baroness Jowell in the other place—a very special moment in Parliament’s history, and one I will always be glad to have been there for, although I am very sad that she had to be there. I could speak about how horrible chemotherapy is and about how deeply a girl can feel the loss of her eyelashes, for example. I could speak about my support for health labelling for alcohol, as so few people are aware of the connections between alcohol and breast, bowel and other cancers.

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

indicated assent.

[Thangam Debbonaire]

The Minister is nodding vigorously from a sedentary position, and I hope that means he will support better labelling.

I could speak about how important healthy habits are generally for reducing cancer, and again I ask the Minister to do more to urge people to take up those healthy habits from an early age. I could speak about how all women should learn how to check their breasts properly, because so many have told me that they do not how to do that. I could talk about what I learned last week in CERN, of all places, where the Large Hadron Collider is, about the contribution that that scientific institute has made to improving diagnoses of cancer. I could mention, for instance, the development of the MRI—the magnetic resonance imaging—machine. I spoke to scientists there who, I am glad to say, are doing what they can to reduce the very frightening knocking that happens when a person is inside the machine. However, today, I am going to speak about the patient experience of a very specific group—children and young people with cancer and their families.

I say to those children and young people, their parents, their brothers and sisters, their clinicians and the charities supporting them, who may be listening, that this speech is for you. I pay tribute in particular to CLIC Sargent and the Teenage Cancer Trust and thank them and all the other charities, too numerous to mention, that help children and young people with cancer every day. I want to give a very personal thanks to my sister-in-law Emilie, whose volunteering, fundraising and work for CLIC Sargent is an inspiration to so many and whose personal knowledge has taught me so much.

[Mark Tami (Alyn and Deeside) (Lab)]

I am a parent of a child who has had the support of CLIC Sargent. It is not only that the charity supports you from a medical point of view—the people you talk to actually understand what your child and you are going through.

--- Later in debate ---

[Thangam Debbonaire]

I thank my hon. Friend for that intervention. He is absolutely right: these specialist organisations understand not just what the patient is going through, but what the families are going through and how devastating a diagnosis can be. They also know what can be done to help people through it.

I set up the all-party parliamentary group on childhood and teenage cancer last year with the help of CLIC Sargent and the Teenage Cancer Trust, which provide the secretariat, because children and young people living with cancer and their parents told me that they want to have their voices heard in Parliament. I thank the officers, almost all of whom are here, for their work. I thank my hon. Friends the Members for Alyn and Deeside (Mark Tami), for High Peak (Ruth George), the hon. Members for Filton and Bradley Stoke (Jack Lopresti) and for Strangford (Jim Shannon) for their support.

Childhood cancers are, thankfully, rare. Just 4,000 children and young people under 25 are diagnosed with cancer each year in the UK, but this rarity means that they are very often difficult to diagnose and, therefore, much more likely than older patients to be diagnosed at emergency at a later stage. That also means that the treatment can be difficult and that children, young people and their parents have to travel a long way for specialist treatment. It can mean that treatment can be particularly and unpleasantly aggressive. There are consequences for children’s education and their future employment. The treatment may also affect their fertility—something that they may not even be thinking about at the time of diagnosis. It may cause a disability. It may set them apart from their friends at exactly the moment when they are just finding out who they are.

In Bristol, the Teenage Cancer Trust provides a specialist ward for teenage cancer patients—I thank everyone who works there. It is able to help teenagers and their parents to get through this difficult time with services that are tailored to their specific needs. CLIC Sargent provides specialist support, which, in Bristol, includes a home—not a house—for children and their families to live in and have care from while they are having treatment for cancer. Indeed, a parent I met when visiting the CLIC Sargent house told me of arriving in Bristol in the morning with nothing—apart from them and their child—expecting just a check-up, and by the evening discovering that their child had cancer and that the treatment was due to start immediately. The CLIC Sargent social worker in that case can explain what the house does and what the facilities are and help to guide people who are suddenly dealing with not only a really traumatising experience, but having no food, no clothes and no supplies for the next few days.

Two years ago, the “Cancer costs” report, the parliamentary launch of which I had the honour of hosting in autumn 2016, identified specific costs for families affected by childhood cancer. I urge the Minister to relook at that—I am sure that he has already seen it. Young people and parents at that launch told me that they wanted a voice, hence the formation of the all-party group. We are launching our first inquiry on Monday, looking at patient experience, and I know that the Minister will want to engage with that process as we go forward.

We want Parliament to better understand the really specific experience of children and young people with cancer and their families and to identify whether their needs are being met and where improvements can be made. For example, there might be suggestions for improvements to cancer diagnosis, post-treatment support, or help with the specific issue of the impact of the diagnosis that my hon. Friend the Member for Alyn and Deeside mentioned, as well as all the other areas that I have listed.

Many of us here may have had contact with children with cancer or their parents in our constituency work. I say to those people: this inquiry is for you, but it is also about you and with you. Young people, parents and professionals can get involved from Monday by filling in the short online survey on the all-party group’s Twitter feed and website. They can find out more about the inquiry on the webpage if they just google “APPG young cancer”. Our lines of inquiry are also informed by what children, young people and parents have already told us, and we have young people involved in hearing and analysing evidence as well as giving it.

The Government have committed to collecting patient experience data for the under-16s, and research into how that can be undertaken is progressing. We are pleased to hear about that data collection, but I would like the Minister to consider how it might be improved and tell us a bit more about that.

[Mark Tami]

A few years ago, CLIC Sargent produced a report about children with cancer returning to school. That really highlighted some of the major problems and the lack of guidelines to give teachers a proper understanding. Particularly for children who are very young, it is difficult not only for the child with cancer but for the other children at the school, particularly girls who have seen their friend, who looked perfectly normal, without hair, or something like that. It is a very difficult situation. We need a proper system in place so that those children can be properly included rather than excluded.

[Thangam Debbonaire]

My hon. Friend is absolutely right. I know from my experience in my own circle exactly how that can affect not only the young person but their educators. Young people have spoken to me of really different experiences. Some have said that they had good support from their school, while others have been told, rather sadly, that they were upsetting their peers with their hairlessness. I find that really challenging, because a child or a young person with cancer is actually an opportunity for schoolteachers to work with young people on how they can not only support their friends but reduce their own risk through making healthy choices at that point.

I reiterate to all hon. Members in the House and beyond that, if they would like to get involved with the all-party group or this inquiry, they should please get in touch with me. If children, young people, parents or other family members also want their voice heard in the inquiry or in Parliament, they can contact the group or me, or their own MPs. I hope that the Government, and Parliament generally, will be willing to hear the voices, needs and experiences of children and young people with cancer, and their families. I am sure that everyone here is committed to that, but we really must actually do it.

NHS Winter Crisis

Thangam Debbonaire Excerpts

Wednesday 10th January 2018 Commons Chamber

[Mr Hunt]

My hon. Friend is absolutely right. I hope she will not mind my saying that her case involved cancer, and one of the things that the planned approach allows us to do is make sure that we do not have to cancel cancer operations, which are the most important, at the last moment. That is essentially what we are trying to do: protect everyone who is in a life-critical situation.

[Thangam Debbonaire (Bristol West) (Lab)]

I have to intervene. I had treatment and an operation for cancer. If my operation had been cancelled, I would have been able to come to this House and ask the Secretary of State personally to intervene, but I am speaking today on behalf of Carly O’Neill, who went to the press to talk about her cancer operation. What explanation does the Health Secretary have to give Carly O’Neill and other cancer patients for their operations being cancelled?

[Mr Hunt]

I say, very directly, that the instructions from NHS England could not have been clearer that cancer operations should not be cancelled, because they are deemed to be urgent. From the perspective of the Government and NHS senior leadership, such cancellations are not acceptable. If the hon. Lady knows of individual cases, she should raise them with me and we will look into the matter. It is precisely because we want to preserve capacity for people who need it the most that we have taken these difficult decisions.

Oral Answers to Questions

Thangam Debbonaire Excerpts

Tuesday 19th December 2017 Commons Chamber

[Mr Hunt]

I totally agree with my right hon. Friend. One of the best things about the NHS is that people have a GP who knows them and their family. There is a lot of evidence that that is the best way to manage people with long-term conditions, as she rightly says. The truth is that, for a very long time, successive Governments have not invested as much as they should in general practice. We are trying to put that right, and part of that is flying the flag for what an exciting career general practice is. It is the one part of medicine where doctors have an ongoing relationship with patients and their families over their whole lives, which is very motivating.

[Thangam Debbonaire (Bristol West) (Lab)]

The capacity and availability of at least one GP surgery in my constituency are both profoundly affected by the relationship with NHS Property Services—incomplete maintenance jobs and vastly increased rent are problems. Will the Secretary of State meet me and the practice manager of that GP surgery to discuss this?

[Mr Hunt]

I understand the concerns that the hon. Lady raises; they have been raised by a number of Members. There are historical issues on the levels of rent charged by NHS Property Services, which frankly are not fair given the variation in charges to different GP practices across the country. I will be happy to look carefully into the issues she raises.

Autism Community: Mental Health and Suicide

Thangam Debbonaire Excerpts

Thursday 30th November 2017 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

I thank the Backbench Business Committee for bringing this debate before us and the hon. Member for East Kilbride etc. (Dr Cameron) for leading on it. I also wish to say a special thank you to Mr Speaker and Mrs Bercow, who have done so much to support autism awareness in the House and beyond, particularly through their support for the National Autistic Society.

I should make a declaration of personal interest: I have a young cousin on the autistic spectrum, and I am married to someone who runs a special educational school for people with autism. My constituency team has also prioritised making Bristol an autism-friendly city. We have made a start, but we have more to do. We have held a training event for employers on how to make reasonable adjustments in recruitment and employment practices, and have had training for my team and made some adjustments ourselves.

That matters because unemployment is unacceptably high among people with autism, which contributes to mental ill health. According to the National Autistic Society, only 16% of adults with autism are in full-time paid work, and only 32% are in some kind of paid work, compared with 47% of disabled people and 80% of non-disabled people, and we know that unemployment affects mental health and self-esteem. The Government have committed to halving this autism employment gap by the end of this Parliament. In the interests of the mental health of people on the autistic spectrum, I urge the Minister to urge her colleagues to do everything they can to meet that much-needed target.

I have heard from schools in my constituency that funding pressures are affecting their specialist provision for children with special educational needs and mental health problems. Some families have told me that they have experienced effective or partial exclusion from school because of a lack of understanding of autism or of specialist support. That in turn leads to further mental health problems and is exacerbated by a lack of autism-focused specialist mental healthcare and high demand for mental healthcare generally. They have also told me of brilliant support and help from some teachers and schools, but they have fears about staff changes and worries about funding.

I have talked to public venues about what they can do with the help of the National Autistic Society and others to make themselves more autism-friendly. It cannot be acceptable that, according to the Royal College of Psychiatrists’ briefing for this debate, autistic people are more than seven times more likely than non-autistic people to commit suicide and that so many young people on the spectrum have at least one anxiety disorder. None of us wants to accept this, and we do not have to, and there is much we can do.

As I have said, my team has made autism a priority. In association with the fantastic Bristol Autism Support service and the local branch of the National Autistic Society, we recently held what we think was the country’s first MP constituency surgery specifically for adults with autism and parents of children on the autistic spectrum. I encourage all colleagues to do likewise, and I am happy to talk to them about how we did it. It meant that adults with autism and the parents of children with autism could come and tell us about challenges they faced with simple things such as transport and public spaces, as well as housing and employment, all of which affect mental health.

I am not going to repeat things that hon. Members have already said, particularly the hon. Member for East Kilbride, Strathaven and so on—I am so sorry, I cannot pronounce the last bit.

[Madam Deputy Speaker (Mrs Eleanor Laing)]

Lesmahagow.

[Thangam Debbonaire]

Thank you, Madam Deputy Speaker.

The hon. Lady comprehensively listed recommendations that I urge the Minister to follow. I will finish by recommending two things. First, I suggest that hon. Members who care about autism and the 1% of our population who are on the autism spectrum consider, as I have done, asking a member of staff to champion that cause. I work closely with my member of staff, Councillor Mike Davies, who is our local autism lead on the council and within my own team. He has patiently taught me a great deal about how to make Bristol a truly autism-friendly city. We have a lot more to do, but I know that, with someone like Mike, I will be able to do much more than I would otherwise have done.

Secondly, I would like us to take a leap. In the House restoration and renewal programme, we could decide to work with the National Autistic Society to make this place autism-friendly. Doing so would help not just people on the autistic spectrum, including children and their parents, but all of us. It would make the place calmer, more welcoming and truly more accessible for everyone. It would be the mother of Parliaments leading by example to the rest of the country so that we can truly make the United Kingdom autism-friendly and address the chronic levels of mental ill health and suicide risk for people on the autism spectrum. I recommend that colleagues consider the suggestions that have been made by me and my team, and by others in this House.

HIV Treatment

Thangam Debbonaire Excerpts

Wednesday 29th March 2017 Westminster Hall

[Thangam Debbonaire (Bristol West) (Lab)]

I, too, wish to add my thanks to the hon. Member for Finchley and Golders Green (Mike Freer). Does my hon. Friend agree that having such a confusing and complex mix of commissioners and authors of standards for prescribing does not help to establish the consistent commissioning of drugs such as PrEP, which he has mentioned and which would help so many people not only in his own constituency, but in Bristol West?

[Peter Kyle]

Bristol and Brighton share many of the same characteristics in terms of demography and the numbers of people living with the long-term condition of HIV/AIDS. I agree with my hon. Friend wholeheartedly. The hon. Member for Finchley and Golders Green made the point very well about the split that was created in the Health and Social Care Act. It is having an impact on communities and I hope Ministers will finally realise that that needs to be prioritised.

In the work I have been doing with the people who deliver frontline services, I have learnt that the people who live with HIV/AIDS often have complex needs. The landscape for provision is also complex and moves from prevention to treatment. As my right hon. Friend the Member for Exeter mentioned, people are living into old age with HIV—that is not entirely new, but it is a fairly recent development. We should celebrate the fact that people now live into old age with HIV, but it presents us and our health service with very complex challenges.

I too have met people living into their 70s and 80s with HIV, who, when they were first diagnosed pre-1996, were given just weeks to live. There is an additional challenge for such people, as hinted at by my right hon. Friend. Many of those people are not only vulnerable because of the comorbidities and complex health challenges that they may have, both physical and emotional, but many of them spent all of their money when they thought they had a very short time to live, so they are additionally vulnerable because of their financial position. That means those individuals need the holistic care that they deserve.

The hon. Member for Finchley and Golders Green spoke well about the split created by the Health and Social Care Act 2012. I have seen its direct impact on support for people living with HIV. Some people are failing to get the comprehensive care that they need. That is leading, first, to individuals with complex needs not getting the comprehensive care they need, and, secondly, to providers of comprehensive care not getting the funding they need to provide the services. That is causing a terrible ruction in the provider landscape for HIV. Specifically with regard to Brighton and Hove, I am referring to the Sussex Beacon—I shall talk more about that in case the Minister is not aware of its fantastic work.

First, it is important to describe the general health landscape in the city of Brighton and Hove, which is in crisis. We have a hospital, a clinical commissioning group and an ambulance trust in special measures, as well as patient transport services whose privatisation was botched, and which were then renationalised, all within six months. On top of it all seven GP surgeries have closed in the past 12 months. The service is comprehensively in crisis. However, there is one jewel in the crown—the Sussex Beacon, which was established as a hospice in 1992, to provide end-of-life care for people who were dying because of HIV and AIDS. It has flourished and evolved as the needs of the client group have changed and evolved over time. It is a remarkable organisation, providing preventive, outpatient and inpatient services, and more than 2,000 bed nights a year.

Last year the Care Quality Commission said that the Sussex Beacon is outstanding. It is one of the true beacons of health in the community, and I am proud that it exists to provide comprehensive, holistic and tailored care for individuals living with HIV. It is incredibly important to the community. Because of the split, however, no one agency is taking overall responsibility for funding the Sussex Beacon any more—not the local authority, and not any of the funding agencies designated to do so by central Government. As a result, its statutory funding has fallen by £400,000 a year. That funding gap is bringing an extraordinary organisation to its knees.

In Brighton and Hove politics there is a rainbow coalition. The three MPs are each from different parties, but last year we united in writing, along with the leader of the council, to the Health Secretary, to point out how extraordinary the work of the Sussex Beacon is, and what the dangers are. We pointed out what would happen if all its client group—people with extremely complex needs who were used to and are deserving of specialist care for the special challenges they face—were to be transferred from somewhere rated outstanding to somewhere in special measures, such as a hospital struggling to cope with the patients it has at the moment. Before the general election, the Health Secretary took time to come to Brighton and visit the Sussex Beacon for a photoshoot, as did the Prime Minister when she was Home Secretary on another occasion. Sadly, neither had time to respond to the letter about the dangers that the service will face in future. It was passed on to another agency in the Department of Health for a response.

Perhaps people felt that we were crying wolf, but we were not. The trustees of the Sussex Beacon have issued a warning that they will start to shut services from June this year unless the funding gap is closed. Staff have been put on notice of redundancy. We are in the last chance saloon for that fantastic organisation, which is celebrated beyond Brighton for the services it provides. I urge Ministers to consider the specific challenges it faces. The Minister will know what an achievement it is in today’s health environment to get an outstanding rating for something so complex, meeting such complex needs. Because of the nature of the debate, she will know that the people who use the services count on them in a heartfelt, emotional and dependent way. It is an extraordinary service and I urge her to look directly at the challenge and see what the Government can do. Once the service is lost it will be gone forever, and will not be coming back.

I labour the point for two reasons: because I am a Member of Parliament for the area that the Sussex Beacon serves and one of its patrons, but also because it speaks to the challenges that comprehensive providers face in an environment in which funding has become very specialised and very narrow. Comprehensive providers are struggling to find their feet in the new environment. What is happening to the Sussex Beacon is relevant to the broader challenges faced by the sector, in the broader health environment.

--- Later in debate ---

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Main. I thank the hon. Member for Finchley and Golders Green (Mike Freer) for his excellent chairmanship of the all-party parliamentary group on HIV and AIDS, for securing this important debate and for his comprehensive opening speech. It was a tour de force.

I also thank the other hon. Members who have contributed to the debate. I thank the hon. Members for Strangford (Jim Shannon) and for Linlithgow and East Falkirk (Martyn Day), my right hon. Friend the Member for Exeter (Mr Bradshaw) and my hon. Friends the Members for Hove (Peter Kyle) and for Bristol West (Thangam Debbonaire) for their excellent and knowledgeable speeches and interventions. They will all have given the Minister much to think about.

We have come a long way since the height of the HIV/AIDS epidemic of the 1980s, but that does not mean that we should be complacent in our approach to the disease now. Across the UK, an estimated 101,200 people were living with HIV by the end of 2015; 87% of them had a diagnosis, and 96% of those diagnosed were accessing treatment. Although they are a minority of people in the wider population, they are a significant minority that we cannot let down when it comes to their care and treatment.

The number of people receiving HIV care in 2015 in England was just over 81,000. That is a 73% increase in the number of people accessing HIV care since 2006. In part, that is welcome, as it means that more people are accessing care that can improve their lives, but it also provides us with reasons to ensure the future quality of care provided, and that is the crux of why we are here today to debate this issue.

As the APPG highlighted, it is understood that since the passing and implementation of the Health and Social Care Act 2012, there have been growing complications with the commissioning and provision of HIV services across the healthcare system. In the rest of my contribution, I will touch on the Health and Social Care Act’s impact on HIV services, but I will also expand into other areas, such as the cuts to public health budgets and the worrying trend of decommissioning of HIV services, and finally I will touch on issues regarding PrEP.

Since the passing of the Health and Social Care Act, there has been a significant fragmentation of our NHS and wider health services. During the passage of the Act, Opposition Members felt that it was an unnecessary top-down reorganisation. The case of HIV services proves exactly how that fragmentation is causing consequences for the future of vital services. The creation of CCGs and the devolution of public health to local authorities have fragmented HIV services across various bodies, with no coherent commissioning and oversight. Currently, services are failing to maintain the standard that patients expect. That is down to commissioning responsibility not being clearly defined under the Health and Social Care Act. Although the coalition Government argued that the Act would ensure the streamlining of services, the opposite has clearly been the case for HIV services.

I therefore want to push the Minister on what she is doing to look into the APPG’s recommendations, especially about joint commissioning for support services by NHS England and CCGs, along with co-commissioning of HIV and sexual health services by local authorities and NHS England. Another issue that the Minister must look at—I raise this repeatedly with her—is public health funding. The cuts to services further exacerbate the problems that HIV services face because of commissioning responsibilities being unclear, which is pushing services to walk away from their responsibilities.

I know that the Minister will reference the funding going into regular HIV testing and the promotion of safe sex, along with the HIV innovation fund, but the impact on funding cannot be ignored. Last week, the National AIDS Trust published a report showing that in England, there has been a 28% decrease in the expenditure between 2015-16 and 2016-17. That is on top of the cuts to HIV support services, or decommissioning of said services, in Lambeth, Southwark, Oxfordshire, Portsmouth and Bexley. Although public health budgets are only one part of the funding streams for HIV support, treatment and care, they are nevertheless an important part of the pathway, as cuts to sexual health services more broadly are detrimental to HIV care. The £200 million in-year cut and 3.9% cut year on year will only have a negative impact on the future of all sexual health services, including those for HIV. The Minister must seriously address that false economy, or risk seeing a public health crisis that could easily have been avoided.

[Thangam Debbonaire]

I thank my hon. Friend for the excellent speech that she is making. I want to add my support for what she has just said, and perhaps go a bit further. Does she agree that the Minister needs to address the fact that the failure to address preventive services will only store up costs and problems further down the line, and that when there are cuts to public health grants, those services need to be ring-fenced or protected in some other way so that we are not storing up problems for the future?

[Mrs Hodgson]

I thank my hon. Friend for that helpful intervention. I agree with her absolutely. The whole point of preventive services—HIV and sexual health services are preventive—is to save money, and lives, further down the line. We regularly debate preventive measures for other health issues with the Minister in this Chamber.

There is still a question mark over the future of HIV services, not only because of the cuts that we are seeing now, but because the future of public health budgets after 2018 is not guaranteed. There are also issues with the devolution to local authorities of business rates, which will be used to fund public health spending. The Government have still not published details of how they aim to ensure that public health will continue to be prioritised when that comes into effect. I hope that the Minister will be able to offer clarity today.

PrEP is a highly effective way of protecting someone who does not have HIV from contracting it. As the UK PROUD study showed, it was 86% effective in preventing HIV transmission and, if taken correctly, it has closer to a 100% success rate. That is why it is important that this drug treatment is supported as much as possible. While the announcement on the feasibility study is welcome, questions remain that the Minister must answer. Nearly four months since the trial was announced, we are still none the wiser as to when it will begin, other than that it will begin early in the 2017-18 financial year. I welcome that in her letter to the APPG yesterday the Minister said that the trial would begin in the summer, but I hope she will offer further clarity on when we will know more. There remains an issue with the drug Truvada, which is used in PrEP. For the trial to reach the 10,000 people that it plans to, a generic version of Truvada will need to be used. I am interested to know what conversations the Minister has had with Gilead, and how co-operative it has been to ensure the success of the trial.

Finally, I want to ask the Minister about the concerns that many PROUD participants will run out of their supply of PrEP this week, and that between 350 and 4,000 individuals at the highest risk of HIV will run out of supplies. That is a matter of urgency, and the Minister must address it as a matter of priority. We cannot allow the people who take this drug treatment to be put at risk. Therefore, I hope the Minister will go away today and look at the matter immediately.

These issues are highly important to many people who live with HIV or within those communities where infection rates are more common than in others, as we heard from my hon. Friends the Members for Hove and for Bristol West. I was shocked and surprised to hear that there is four times the normal rate of those people in the community of my hon. Friend the Member for Hove. I am well aware why he is here today to speak for his constituents.

The Government’s mismanaged approach to the NHS’s structures and to wider health services is seeing services fall through the gaps and people’s lives affected, which is exacerbated by short-sighted cuts. It is important that we recognise the work that has already gone into addressing HIV in our society, but accept that we still have a long way to go. We cannot squander these opportunities, as we could see yet another public health crisis due to complacency and failure to step up and address this issue. I hope the Minister has listened carefully to all the contributions to the debate and the seriousness of it, and will go away and do the right thing by the tens of thousands of people living with HIV or at those risk of contracting it, and support them. They should not be let down.

--- Later in debate ---

[Thangam Debbonaire]

I am sorry to interrupt the Minister. I think she mentioned a minute ago something about protecting public health funding for two years until the change to business rates. I am so sorry, but I missed that point. Could she clarify it? Does she mean that this is a new announcement of new protections?

[Nicola Blackwood]

The public health ring fence will remain in place until 2019.

We also recognise, as recommendation 1 makes clear, that HIV support services are an important part of the overall care that people diagnosed with HIV receive to support their health and wellbeing. I have heard hon. Members’ concerns today about such services being decommissioned because of budget pressures. We are increasing our focus on supporting and improving place-based commissioning, and will work to provide the right opportunities for all commissioners and providers involved in a care pathway to work together to secure the right service response for the needs of the local population, taking into account each partner’s responsibilities.

In line with a number of the recommendations, we also need to ensure that we make the most effective and efficient use of the resources available. We are already seeing some really effective examples of that in the Public Health England HIV innovation fund, which supports voluntary sector-led projects across the country that are focusing, as my hon. Friend the Member for Finchley and Golders Green knows only too well, on HIV prevention and testing. That includes the OutREACH project in Cumbria, which is using community pharmacists to provide HIV testing in a rural area with very high rates of late HIV diagnosis, and the MESMAC project in Yorkshire, which is providing HIV awareness training and testing at a hostel housing migrants who are claiming refugee status in the UK. We are also encouraging innovations such as home testing. Our aim this year is to see 50,000 tests for HIV carried out at home. They are already starting to make a difference. The introduction of compulsory relationships and sexuality education will, as my hon. Friend says, have an important role to play in prevention.

I was very sorry to hear the comments made by the hon. Member for Hove (Peter Kyle) about the Sussex Beacon. I am sure that, given his account of the clear local need and the quality of the service, he is holding local commissioners to account for their decision making. I am afraid that my recollection is that I had responded to him on that matter, and not an arm’s-length body. I am very sorry if there has been confusion, but I am happy to continue the discussion following this debate, so that we can clear it up and ensure that we make progress on it. I would not like him to think that we do not take it very seriously indeed.

As we all know, delivering high-quality HIV services is about not just funding, but getting the commissioning right. As the report highlights, a lot of work still needs to be done to ensure that the commissioning landscape for the services supports effective collaboration and co-operation, so that we can continue to see improvements in these and other outcomes. That is exactly why Public Health England commissioned a sexual health commissioning survey, which very much supports the findings of both the Health Committee and APPG reports.

I recognise that commissioning sexual health and HIV services is complex, given the range of services and the different population needs that are covered under the broad umbrella of sexual and reproductive health and HIV. We are very alive to and are working to address the risk of fragmentation damaging the progress that we have made, so I am particularly pleased to announce that, shortly, Public Health England will launch an action plan to support commissioners and ensure that they can provide the sexual health and HIV services that their populations need.

As its first priority, Public Health England will look for ways in which to reduce the fragmentation of commissioning and address the barriers that stop effective collaboration and co-operation between commissioners. That will include encouraging the development of a model of lead integrated commissioning in each locality, including developing models for out-of-area tariffs and other issues that can slow down contracts and increase costs. PHE will also identify system leaders across the country to lead local sexual health, reproductive health and HIV commissioning in an agreed locality and form a national network of commissioning leads to promote the effective national development of commissioning.

To test out how that might work in practice, PHE will pilot local delivery models working with local authorities and CCGs to help to build on effective models of commissioning. We will announce the names of the pilot sites shortly—the work is still in the early stages of implementation—but I take this opportunity to urge any areas that are interested in working with us to get in touch with PHE and to take part in developing the work as it takes shape.

Breast Cancer Drugs

Thangam Debbonaire Excerpts

Thursday 26th January 2017 Commons Chamber

[Mrs Hodgson]

I agree. What price can be put on those precious months?

[Thangam Debbonaire (Bristol West) (Lab)]

I have some investment in this. My own experience of breast cancer treatment over the last two years has left me passionate about the issue of prevention and early diagnosis. Will my hon. Friend join me in not just thanking the breast cancer charities—as she has already done—but calling on all Members to spread the word among all the women they know that they must learn how to examine their breasts? I learnt how to do it from a comic sketch in a television programme: that is how I diagnosed my lump. I want everyone to learn how to do it, and also to learn what they can do to help prevent breast cancer, because, although there is no magic prevention method, there are ways of reducing the risk.

NHS and Social Care Funding

Thangam Debbonaire Excerpts

Wednesday 11th January 2017 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

I was going to speak about the effects of cuts to health and social care funding on hospitals and healthcare in the south-west, but all the things I wanted to say have been eloquently said by other hon. Members. So, in keeping with other speeches I have made recently, I have decided not to repeat what has already been said, to scrub all that from my speech and to talk about something completely different: the health consequences of loneliness in older people; the impact of funding cuts to NHS and social care systems on loneliness; and the impact of older people’s loneliness, in turn, on the healthcare system.

In the run-up to Christmas, I was regularly blinking back tears on the underground whenever I saw the advert from Age UK, which I am sure many hon. Members will have seen, which had the slogan, “No one should have no one at Christmas”. For Members who might not remember it, it looked something like the Age UK report “No one should have no one”, which I have here and which I re-read yesterday. It was published in December last year and is about loneliness in old age. Reading that report brought home to me just how much loneliness affects older people and how funding cuts that may appear small and insignificant can have a cumulative effect on older people.

A constituent illustrated that to me recently when she came to talk to me about her worries for the older people she cares for as a very low-paid care assistant. She was not complaining about her pay, by the way—I am just making that observation. She told me that she regularly stays well beyond her low-paid hours because she feels the people she is working with need her. That is partly because they have greater care needs than can be dealt with in the time allowed, and because they are lonely. As I said, she was not complaining, but if we starve social care of funding, such people will be subsidising the health and social care system. She is doing that voluntarily, but things should not be left to chance like that.

The Age UK report mentions the survey that it carried out of 1,000 GP practices as part of its campaign in 2013 to end loneliness, which found that nearly 90% of GP practices felt that some patients were coming in because they were lonely. The report also points out that funding cuts mean that meals on wheels, day centres, libraries, community centres, lunch clubs and public toilets have been cut or closed in recent years. It points out that all that decreases the opportunities for older people to get out, socialise, take care of their health, eat well and exercise, which increases their loneliness and isolation and damages their health.

What does that have to do with chronic serious illnesses? Age UK carried out an evidence-based review for its loneliness report, and it found that chronic loneliness increases the risk of serious illnesses such as diabetes, stroke, depression and dementia, as well as making it much harder for people to get out and receive help or do things that might prevent those conditions from getting worse, such as exercise or having a good diet.

I pay tribute today to all the people across the country who give their time as volunteers, staff and fundraisers for charities such as Age UK nationally and locally, and in Bristol, for Bristol Ageing Better, which does so much to combat loneliness in older people.

Let me read one example from the Age UK report:

“Arthur’s son was worried that his health was deteriorating because of the many hours he was spending alone in his flat in sheltered accommodation. He was unwilling to participate in group activities because of difficulties hearing. He had had a busy social life, but most of his friends had died...Age UK introduced him to Paul, who had had to retire early after an accident and was feeling increasingly isolated...They play dominoes and cribbage. They dissect the latest football match and reminisce about their time in the building trade—swapping funny stories of mishaps and adventures. Paul has provided Arthur with good company and a ‘link’ back to the job he loved. Arthur has helped restore Paul’s sense of purpose and self-worth.”

That example and the many others in the report show just how much work on loneliness can help to improve older people’s health and to reduce the costs on our health and social care system.

It is vital for the Secretary of State to address what the CEOs and staff in NHS hospitals and primary care in my area have told me about the impact that cuts to social care have on delaying discharge from hospital, and I hope that he does so. I also want the Minister to tell us exactly how he and the Secretary of State are going to lead the way in providing us with a fully integrated and fully funded health and social care and mental healthcare service.

I want us all to read Age UK’s report and follow the recommendations that it makes for MPs, among others. It asks Members of Parliament to

“Find out…about loneliness among older people in your constituency…raise awareness…Become an Age Champion”,

and to encourage our own political parties to do more. It asks us to

“Take steps to put loneliness in later life on the Government’s agenda”—

I hereby do that—

“and hold them to account for progress”,

which I will continue to do. It asks us to

“Make the case for investment in local community resources to support sustainable, long term action to help lonely older people, wherever they may be.”

I urge the Government to take note of that. Finally, it asks us to

“Support the work of the Jo Cox Commission on Loneliness”,

which is launching shortly. I would like us all to take those words to heart.