Oral Answers to Questions

Liz Twist Excerpts

Tuesday 24th July 2018 Commons Chamber

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

I wish my hon. Friend’s constituent well and pay tribute to the money that the local community has raised. I will connect my hon. Friend to the office of Cally Palmer, the national cancer director. As we write the new long-term plan for the NHS—to which the cancer stream is so central—we will ensure that innovative new technologies and treatments that were not thought of even a few years ago are also at its centre.

[Liz Twist (Blaydon) (Lab)]

T6. Three times more people die by suicide each year than in road accidents. Today, Samaritans volunteers across the UK are taking part in its awareness campaign, “The Big Listen”. What action is the Secretary of State taking to ensure that local agencies are encouraged and resourced to carry out awareness-raising work to get out the message that suicide is preventable, not inevitable, in line with NICE’s draft guidelines?

[Jackie Doyle-Price]

I thank the hon. Lady for her dedicated work on this issue. She is right to pay tribute to the work of the Samaritans, and the Department is pleased to do everything that we can to support the Samaritans in this area. Our real tool for tackling suicide is to ensure that the local suicide prevention plans are up to spec to deliver a reduction in suicides. We will be taking steps properly to interrogate the quality of the plans so that we can deliver against the guidelines.

Department of Health and Social Care and Ministry of Housing, Communities and Local Government

Liz Twist Excerpts

Monday 2nd July 2018 Commons Chamber

[Craig Mackinlay (South Thanet) (Con)]

We have heard some fantastic speeches from Members on both sides of the House about adult social care. I am not sure that we have been given the solution, but I think we have realised that there is a problem that needs to be solved.

Housing represents, potentially, a great asset for people in later life, which can help to pay for adult social care and other services that people need as they age. My worries are about house-price-to-earnings ratios and house price inflation. In 1996 the Nationwide house-price-to-earnings ratio was just 2.8, which means that 2.8 times someone’s earnings could buy that person the average house in the United Kingdom. Over the past 40 years, house price inflation has averaged 5% a year. That affordability gap is now extremely wide throughout the country. It is bizarre. One would have thought that the areas with the highest house prices would have the lowest ownership, but the reverse is the case. In the north-east, 60% of people are owner-occupiers, and the house-price-to-earnings ratio is just over 5. In the south-east, where house prices are obviously higher, 70% of people own their homes, but the ratio is now close to 10. That does not quite follow the pattern that we might expect.

Back in 1995, it would have cost first-time house buyers 17.5% of their incomes to service their mortgages. According to the figures that are available, in late 2016 the proportion was 33%. At the peak in 1989, base rates were approaching 14%, and it was costing 56% of income to maintain a mortgage, so we are not living in unusual times.

Thankfully, we are narrowing some of the gap between housing requirement and provision. It has been running at an estimated rate of 230,000 a year for some years, and will continue into the future. We built 217,000 houses last year, which is all to the good, but we have a fundamental problem: we do not seem to want to live together as generations any more. We seem to want independent living, and that can often lead to lonely living. There is a potential solution there, which might also solve some of the adult social care problems.

Is it time that we had a debate about a further loosening of planning law? Let me put some questions—not solutions—on the table. Are we allowing a degree of timidity in relation to development? Are we just trying to add little bits to existing conurbations, thus increasing pressure? Are we not thinking clearly enough about the building of completely new towns, with proper infrastructure—road, rail, health provision and schools—as part of the plan, rather than simply adding to the edges of existing communities?

Should we be trying to unlock brownfield sites? I can think of a perfect 5-acre derelict site that used to be the gasworks in the middle of Ramsgate. No one wants to develop it because of the remediation costs. Should legislation be introduced to force what are often utility companies to regenerate on pain of, perhaps, an additional business rate charge, or should the Government provide loans with a clawback provision to inject the seed capital to get developments moving?

We do have an existing stock, and I think that two measures would be helpful. Capital gains tax and inheritance tax are a problem, particularly for older people with holiday homes. Let us suppose that an elderly couple have had a holiday home for many years. One of them might become a widow or widower. They have fond memories, and do not want to rent out the property because of the aggravation that it would involve. Most people will not face an inheritance tax charge. Why on earth would they want to sell an asset that is hugely pregnant with gain, paying capital gains tax at 18% or 28%? They would rather leave it in their estate until they die, and perhaps pay nothing at all. As for those with a chargeable estate, why should they pay a 28% capital gains tax charge, and then a 40% inheritance tax charge on the £72 that is left in cash after that tax has been paid, which would represent a total tax charge of 57%?

The second measure I present is downsizing relief for stamp duty. Often, again, this would affect the elderly person, perhaps on becoming widowed. There is a north-south divide in this of course: in parts of the country it will be perfectly possible to buy that downsized smaller property for within the £125,000 stamp duty threshold for paying zero, but for many in the south, particularly in London, there will be a huge stamp duty to pay. My proposal is that we should have a downsizing relief for people moving to a smaller floor-area property—the threshold could perhaps be 75%. The Treasury might say it would lose money, but it forgets that for every seller there would be a new purchaser, so we would be creating stamp duty on purchases that might not otherwise have happened at all.

[Liz Twist (Blaydon) (Lab)]

Does the hon. Gentleman agree that housing is also a key determinant of health and that is an additional aspect that we must think about, especially in housing for older people? We must see housing as part of that bigger picture in creating a healthy nation.

[Craig Mackinlay]

Older people often stay stuck in a house that is not right for their future needs and is further from help they would so desperately require in their later years.

To conclude, housing is a scarce resource, particularly in some parts of the country, and we must maximise its use and maximise mobility.

Phenylketonuria: Treatment and Support

Liz Twist Excerpts

Tuesday 26th June 2018 Westminster Hall

[Mr Laurence Robertson (in the Chair)]

Given the number of Members who will seek to catch my eye, I am imposing a four-minute time limit on Back-Bench speeches.

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

It is a pleasure to serve under your chairmanship in this important debate, Mr Robertson. It is just over 12 months since I was elected Member of Parliament for Blaydon, and only a few days less than that since I first heard of phenylketonuria—commonly known as PKU, which is easier to pronounce. One of my constituents, Barbara McGovern, had called at my office and spoken to a member of my staff about whether I would attend an event in Westminster on 28 June. Barbara’s son Archie has PKU, and she described his condition and some of the restrictions that he has to cope with every day. Her explanation of what PKU means, and her determination to get the best for her son, impressed my staff, who made sure that I attended the reception to learn more about the condition. Barbara and her husband David, and Archie, have travelled from the north-east to listen to the debate, and I welcome them.

Since that first encounter, I have been lucky enough to be introduced to the officers of the National Society for Phenylketonuria, and have had the chance to work with them and its other members to raise the profile of PKU, get people to understand it and its effects, and press for access to treatment and support. I will give a few of the many names that I could mention. Kate Learoyd and Caroline Graham both have children with PKU, and they have dedicated much of their time to talking to Members about the condition and the need for action for people who live with PKU. Professor Anita MacDonald OBE, of Birmingham Children’s Hospital, also does much to raise awareness of the condition and goes above and beyond in advising families affected by PKU on diet.

[Ian Austin (Dudley North) (Lab)]

I commend my hon. Friend on securing the debate and on her leadership of the all-party parliamentary group on phenylketonuria. There are lots of health-related campaigns for more resources, new treatments and drugs. Many have plenty of resources and are funded by major pharmaceutical companies, which hire expensive lobbyists and all the rest of it. The remarkable thing about Kate Learoyd and Caroline Graham is that they are parents of children with the condition, and their campaign is entirely voluntary. They have to fit it around their family and other commitments, which makes their work all the more remarkable.

--- Later in debate ---

[Liz Twist]

My hon. Friend is absolutely right, and of course there are many others working hard in the NSPKU.

PKU is a rare inherited disorder, affecting about one in 10,000 babies. Most people are familiar with the pinprick test that newborn babies are given; that is how the condition is picked up. It is one of a series of tests given. People with PKU are unable to break down the amino acid phenylalanine, which is found in proteins. They must have a diet very restricted in protein to prevent problems. If the condition is not properly controlled, it can lead to severe neurological and brain damage, as well as to behavioural problems. Untreated PKU causes profound, irreversible intellectual disability, seizures and behavioural problems. As the damage is not reversible, early diagnosis and early consistent treatment are vital.

I say that the condition can be treated by diet; that sounds easy, but it is not. Imagine, as a child or young person, trying to cope without all the foods that most children and adults take for granted. When we think of food that is high in protein, we probably think of meat, but that is the straightforward bit. All meats are on the red list, and so is fish. Everyday bread is too high in protein, so people with PKU must have special bread without protein, much of which must be baked at home using a specially prescribed flour.

[James Morris (Halesowen and Rowley Regis) (Con)]

Having learned about the disease and issues connected with it, I think that the hon. Lady is right to argue for better treatment, but I am struck by the peculiar and intense pressures that PKU puts on parents and carers. Does she agree that we should explore ways to support them in coping with those pressures?

[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.

[Neil Gray (Airdrie and Shotts) (SNP)]

I congratulate the hon. Lady on securing the debate and on her work for the all-party group. A constituent shared with me some experiences similar to the ones that she has outlined. They are heartbreaking, and other Members who have constituents with PKU will share that feeling. Does the hon. Lady agree that alongside the medicinal treatments that might be available, it is important to raise awareness, through debates such as this one, and through Thursday’s “diet for a day”, in order to help provide and incentivise more support for parents who are supporting their children with PKU?

[Liz Twist]

I agree; it is important to look at the question in the round.

Many parents find that they need to give up work or reduce their hours to maintain their child’s diet and keep them healthy. At the end of last year, the NSPKU produced a booklet and video, “Patient Voices: Listening to the experience of people living with PKU”, which clearly and movingly sets out the practical and psychological impact of the condition on individuals.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my hon. Friend on getting the time for a debate on the issue; not enough is known about it. It strikes me, as I listen to her, that a child with PKU is a prisoner of their body, in a way, and so are their parents, because of the regimented way they must deal with the child’s needs. Does she agree?

[Liz Twist]

I most certainly agree that it places an incredible strain on parents, who must live with that all the time. I recommend the “Patient Voices” booklet and video to anyone who has not already seen them.

In this debate, I will highlight very specific concerns about treatment and support for PKU. The first is the issue of access to a drug treatment, sapropterin, which is thankfully more commonly known as Kuvan. Although it is available in 25 countries across Europe, and was licensed for marketing over 10 years ago in the European Union, Kuvan is not available to people with PKU in the UK.

[Tim Farron (Westmorland and Lonsdale) (LD)]

I congratulate the hon. Lady on this important debate. She makes a hugely important point about the licensing of Kuvan. The European Medicines Agency licensed the drug in 2008, and 10 years on we have buck-passing between the National Institute for Health and Care Excellence, the Department of Health and Social Care and NHS England. It is deeply concerning. I am representing two children with PKU—I am sure there are many more—in my constituency. I got a letter back from NICE just a few weeks ago that said that the condition and the treatments for PKU are

“the subject of a NHS England commissioning policy…not covered by any existing NICE guidance.”

It went on to pass the buck back to NHS England. Does the hon. Lady agree that it is time for the buck-passing to stop, and for the treatment to be licensed?

[Liz Twist]

I absolutely agree. I hope that one of the good things that will come out of this debate is that the buck stops being passed, and the assessment gets done as quickly as possible. It is so important for people to have access to this drug; we need that to be sorted.

There is evidence that for a significant proportion of people with PKU—about 25% —this drug can significantly improve their condition. It does not cure it, but it does make it much easier to deal with the dietary issues, which have such an impact on the way people live their lives. Despite the drug having been around for so long, NHS England has only recently considered it for the management of PKU. The drug has now been referred to NICE for assessment and technology appraisal. The APPG on PKU recently heard from NICE about the process, but there is concern about the timescales and how the benefits of the treatment will be assessed. Understandably, there is huge frustration on the part of the PKU community that there are children and adults who could be benefiting from Kuvan now, and there is substantial evidence to support its benefits.

There is a particular issue about prescribing Kuvan for pregnant women with PKU, who can understandably find it hugely difficult to control their diet, and who fear the effect of any problems on their unborn child. While there is a 2013 commissioning policy in place that allows Kuvan to be prescribed to some pregnant women, it can be difficult for women to be prescribed it in a timely way.

Some people, some of whom are in this room, have had access to Kuvan through individual funding requests, or on a trial basis. Those people have found real benefits from the drug. My constituent Archie, who is here, started on the treatment earlier this year. Archie tells me he has benefited from having Kuvan, not just because his diet is now much less restricted and he is able to do what many of his school mates do, but because it has improved his energy and his life. As his mum Barbara said to me, “If we had been coming here before the treatment, we would have been bringing our own special breakfast for Archie to eat in the hotel, and would have had to watch everything he ate very carefully. It has made a real difference.” I hope that the Minister will be able to assure us that the assessment of Kuvan will be done very quickly, and that it will be available to the people it can help.

[Vicky Ford (Chelmsford) (Con)]

I congratulate the hon. Lady on securing this important debate. Kuvan, the brand name for sapropterin, is clearly deeply beneficial for about 20% to 30% of sufferers. I met the manufacturers last week, and they told me they had written to NHS England twice to ask for meetings to discuss price, but they are still waiting for a response. Will she join me in urging the Minister to use all his best offices to ensure that that meeting and the price negotiation can go ahead?

[Liz Twist]

I certainly do join the hon. Lady in that wish. I too have met BioMarin, which says it is prepared to negotiate significantly on the price, but we need to get in there and ensure that it happens quickly.

[Mr George Howarth (Knowsley) (Lab)]

I congratulate my hon. Friend not only on securing this debate, but on the knowledgeable and passionate way in which she is putting the case. Does she agree that this is an example of the way that we in this country are very bad at dealing with rare conditions and potential therapies or treatments for them? Does she believe that, while this needs to be hurried up, the whole process needs to be streamlined and sped up?

[Liz Twist]

I certainly agree with my right hon. Friend. It has become clear, as we have looked into the issue, that there is a very complex way of assessing drugs. Clearly, we want to get the process right, but there needs to be a rigorous look at that process, not just for Kuvan, but for other treatments for rare diseases. PKU perhaps falls between the cracks, because it is not quite rare enough to be in that group, but it is still very rare, and will be pushed to the back of the queue if it goes into a more general group.

For those whom Kuvan will not help, and who still need to manage their diet carefully, there is another issue that must be addressed: access to low-protein foods, which help to maintain the diet. Individuals may be advised through their dietician and their specialist centre that they need a particular level of foodstuff supplies, such as the low-protein flour I mentioned, which I am told can be used in many ways to try to make the diet more palatable. General practitioners, however, may not have a complete understanding of the condition or the dietary needs, and may feel that patients are just trying to get food on the cheap, and they may limit or deny prescriptions for those foodstuffs. They may feel that they are like gluten-free foods, which can be bought at supermarkets.

The fact is that those foods and supplements cannot be bought; they are available only on prescription, and the absence of them creates a real injury to those affected. It is not just that they are not there; it is actually damaging if they are not available. It would be good if the Minister could address how we can ensure that GPs prescribe the specialist foodstuffs that form part of the treatment that those with PKU need, and how we can close the gap between the specialist services, clinical commissioning groups and GPs.

[Nigel Mills (Amber Valley) (Con)]

I add my congratulations to the hon. Lady. Does she agree that there should be clear guidance, so that GPs or CCGs that are thinking about stopping prescribing that stuff can be told quickly and clearly that that is the wrong thing to do, and that there is no other way of getting this bread, and so that if one of them is foolish enough to go down that line, there can be a quick resolution?

[Liz Twist]

I thank the hon. Gentleman for that comment, and I agree. Last week at the APPG meeting, we heard some terrible stories; over the years, people have felt as if they were asking for a favour in asking for those goods. They are not; the goods are absolutely essential, and they cannot be bought over the counter. We must do something about that. We need to square that circle.

Finally, for the 75% who will not benefit from Kuvan, it is important that new, innovative treatments are developed and assessed quickly, so that more people can benefit from treatments that enable them to live well and safely with the condition.

To conclude, it is important that we listen to individuals and families who are living with PKU day in and day out. It is time that this condition was acknowledged, and that we addressed the need for effective treatment. I hope that the Minister can give us positive news that will move us forward in helping those with PKU.

This Thursday, on National PKU Awareness Day, I and many other hon. Members in this room and across the House will undertake the PKU “diet for a day” challenge. We will restrict our protein intake to 10 grams a day, avoid all those things we normally eat without thinking, such as that piece of toast in the morning or Rice Krispies with real milk rather than coconut milk, and drink tea or coffee without milk. We know that we will not really face those restrictions day in, day out, or the relentless grind of getting the diet right to stay well, but we hope that it will help raise public awareness of PKU, and help to bring about change.

--- Later in debate ---

[Liz Twist]

What can I say in less than one and a half minutes? I thank all hon. Members who have taken part today. I thank the hon. Members for East Renfrewshire (Paul Masterton), my hon. Friend the Member for Portsmouth South (Stephen Morgan), the hon. Member for Waveney (Peter Aldous), my hon. Friend the Member for Dudley North (Ian Austin), the hon. Members for Chelmsford (Vicky Ford), for Dwyfor Meirionnydd (Liz Saville Roberts) and for Strangford (Jim Shannon), my hon. Friends the Members for Warrington South (Faisal Rashid), for Hornsey and Wood Green (Catherine West) and for Derby North (Chris Williamson), the hon. Member for Linlithgow and East Falkirk (Martyn Day), my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) and the Minister for his reply.

I am rather disappointed that we did not have a bit more promising news on the future of Kuvan, but we will be back; we will ensure that the Minister hears from us again, and we will continue our campaign. Finally, I thank all the families who are here today to show how strongly people feel about the issue. I thank everyone for attending. The issue will not go away. We will be back and will keep pushing this agenda.

Question put and agreed to.

Resolved,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

[Mr Laurence Robertson (in the Chair)]

Would hon. Members leaving please do so quietly? Thank you. We have another debate.

ME: Treatment and Research

Liz Twist Excerpts

Thursday 21st June 2018 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

Like my hon. Friend, I have heard from many constituents affected by ME who asked me to come today to make their voices heard. He made the point about invisibility earlier, but some of the people who are not able to get out do things from their beds. For example, one of my constituents organised the lighting up of the Tyne Bridge in blue last year, so there are things that people do to make sure we get the message across.

[Luke Pollard]

Absolutely. I thank my hon. Friend for making that point. I am a big believer in digital. As colleagues in the House know, I often talk about it. The ability of digital communities to connect the ME community to help them share experiences and realise they are not on their own is especially important, and I pay tribute to all the people like my hon. Friend’s constituent who do so much.

I want to talk about the effect of ME on young people. The condition affects people of all ages, but sometimes the most acute effects are felt by those whose lives have effectively been taken away at such a young age. Dawn reached out to tell me about her son who is 16 years old and suffers from ME. It was initially brushed off as a migraine and a growing pain and she was told children sometimes get stomach aches. She wrote:

“My intelligent, sporty, active son has now spent over two years virtually housebound. This horrible illness has robbed my son of his teenage years. He only has one friend, has huge gaps in his education, won’t be at the School Leavers’ Assembly, nor the prom. He had to give up football and badminton, his real loves. And all we can do is wait until he gets better.”

The stories of young people with ME are especially powerful, because we all recognise the potential in young people and what amazing things, given the right opportunities and support, they can and will do. For many young people with ME that potential is taken away, and it is especially acute because losing time during their school years affects not only their education but their societal development and the friendship networks they build around them.

Oral Answers to Questions

Liz Twist Excerpts

Tuesday 19th June 2018 Commons Chamber

[Steve Brine]

Yes, indeed. As the cancer Minister, I consider CAR-T to be one of the most innovative and exciting treatments ever offered on the NHS. NICE is considering the first of the therapies this year and preparations are well under way. We are working closely with NHS England to make these transformative medicines available to cancer patients.

[Liz Twist (Blaydon) (Lab)]

Patients with PKU—phenylketonuria—are awaiting progress on the approval of a drug called Kuvan. In the meantime, their illness is controlled by diet. Will the Secretary of State and other Members join me in Committee Room 21 after this meeting to hear about the “Diet for a day” challenge, which many Members across the House are taking up next Thursday?

[Steve Brine]

Having just dialled into the Secretary of State’s diary, I know that he is going right after these questions.

Acquired Brain Injury

Liz Twist Excerpts

Monday 18th June 2018 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I am glad to be able to take part in this important debate.

Over the past few months, I have had the pleasure of taking part in the all-party parliamentary group on acquired brain injury, led by my hon. Friend the Member for Rhondda (Chris Bryant). I confess that I first joined what was then a new group at the request of a constituent and friend who works with the charity Headway in the north-east. He was keen that the problems faced by people with an acquired brain injury should be properly and thoughtfully considered, and for action plans to be devised that would seek to help resolve those problems. It was only during the course of the meeting that I had one of those lightbulb moments, realising that one of my family members actually has an acquired brain injury. That is a classic example of one of the difficulties faced by many people with an acquired brain injury; it can be an invisible disability that is not recognised.

This evening I will talk about the issues facing children with acquired brain injury, particularly in education, which was one of the topics on which the APPG heard evidence. Department of Health data shows that in a four-year period, 39,000 under five were admitted to hospital because of falls. Many of these children will be discharged as fully recovered, although the outcome of traumatic brain injuries in children may not become clear until their brain is fully matured. In fact, despite the early years being a key point in brain development, it is also the time when children are most vulnerable to injury. Sadly, it is also the least supported age group.

The APPG heard from the Child Brain Injury Trust in one of our meetings that children are very different from adults after acquired brain injury, because their brains are still developing and will continue to do so until they are in their mid-20s. This means that the full extent of their injuries and subsequent difficulties may not be realised until their brains have fully matured. Up to 70% of children and young people return to mainstream education following their injury.

As we heard in the APPG, in common with many other groups there is a lack of interim access to rehabilitation, whether residential or in the community—community being the main issue for children and young people—so schools and teachers are the main source of rehab for these young folk. Unfortunately those teachers, including special educational needs co-ordinators and educational psychologists, do not have access to training in how to deal with children returning to school with acquired brain injury. Of course, we know about the pressure that teachers already face in their work. Many young people do not have a formal diagnosis of acquired brain injury, so they can be misdiagnosed as being on the autistic spectrum or as having attention deficit hyperactivity disorder. This can be a real detriment to their outcomes and future development.

It is not just at school that children and young people face problems. In the family, the emotional and psychological impact of an ABI can completely change their world. They often face a lack of services in the community, isolation, and a lack of access to funding support and information. They may also be unable to access counselling. They are balanced between child and adolescent mental health services and other non-neurological services, as specialist neurological specialist for children are scarce. Where people live matters; there are few areas of excellence, with the excellent services mostly based around major trauma units.

I could say a great deal more, but I will cut my speech short in view of the time limit. I will just finish by saying that our children deserve better than what they have at present. Children with an acquired brain injury need to have their condition recognised, and need to be supported to do the best they can at school and to improve their life outcomes. I hope that this debate will help to raise awareness, and lead to positive improvements for them and other people with acquired brain injury.

NHS Outsourcing and Privatisation

Liz Twist Excerpts

Wednesday 23rd May 2018 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

On 6 March, I had the good fortune to secure a debate in Westminster Hall on wholly owned subsidiaries in the NHS and was shocked to find how many hon. Members—they were not just Labour Members—had experience of local NHS trusts setting them up. The NHS trust that covers my constituency, the Gateshead NHS Foundation Trust, has set up a wholly owned subsidiary company. It is also advising other trusts on how to do the same.

The Gateshead NHS Foundation Trust is a very good trust, but I am concerned that it has transferred staff who provide the maintenance, cleanliness and operation of the hospital to a wholly owned subsidiary company. There are two ways in which trusts can save money by setting up a subco: through savings on VAT thanks to a loophole—the Treasury appears to be willing to look the other way—and through future savings in staffing as new staff are employed outside “Agenda for Change” pay, terms and conditions. Importantly, there are also savings on pensions because those staff are denied access to the NHS pension scheme.

The savings are coming off the backs of staff, many of whom—porters, cleaners and catering staff—are already on the lowest scales. “Agenda for Change” was introduced to provide a fair and equality-proofed pay system for all NHS staff. It is bad enough that staff working for contractors in the NHS, such as those formerly employed by Carillion and now employed by companies such as Serco, which took over some of Carillion’s contracts, are not on that pay system, but the fact that NHS trusts voluntarily and even eagerly take measures to get around the system is simply outrageous.

Let us be clear: we know the problem is underfunding of our essential NHS services. This Government have failed to provide adequate funding right across the NHS and some trusts have taken the decision to set up these subcos in an effort to make that money go further. We understand that on the Labour Benches. But it is beyond the pale to ask lower-paid staff to make the savings from their own pay packets. All of us, on both sides of the House, say how much we value the NHS workforce, but that means not only nurses and doctors, but the staff who make the hospital work. They are an essential part of the NHS team, and the Government must ensure that they are treated fairly, now and in the future.

There is another concern about these subcos. There is a real concern that they are being set up ripe and ready for privatisation: a neatly packaged organisation, vulnerable to the vagaries of the market. This is not the NHS we want. We want an NHS that recognises the value all of its staff, from cleaners and porters to allied health professionals such as occupational therapists and radiographers, from maintenance staff to nurses and, yes, doctors. We need an NHS that does that so that we can provide the best possible care for patients. We need to ensure that we maintain these services in the public sector, and I know that there is huge support from my constituents for ensuring that our NHS services are directly provided by NHS staff.

Earlier today we heard that staff at Wrightington, Wigan and Leigh NHS Foundation Trust are taking industrial action against a proposal to transfer them to a subco. More than that, they are striking against the privatisation of NHS services. I wish them, and staff in other trusts standing up for our NHS, every success.

Social Care

Liz Twist Excerpts

Wednesday 25th April 2018 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I want to touch on some of the social care workforce issues. Social care is what we rely on when we need help—whether that is residential care when we need to go into a home, or care in our own home. We rely on social careworkers, residential careworkers, and home careworkers and support workers if we need help at home. These are staff who deal with our most personal needs at a time when we might be at our most vulnerable, yet we fail to value adequately the work that they do and the care and sensitivity with which, on the whole, they deliver it. I know how vital that support is and how well and compassionately it can be delivered when it is at its best, as we briefly had that support for both of my parents recently.

These are staff who are often under pressure to meet impossible visit schedules, who are on the frontline of looking after our families and neighbours, and who are on the lowest pay grades, too. They are predominantly female. As has been mentioned, Unison, the trade union that represents many of these staff, conducted a survey of the staff in social care with Community Care magazine. It showed a picture of staff feeling stressed, working more hours than they are paid for each day, and staff shortages that put pressure on others. It gets more basic than that: many staff are not even being paid the national minimum wage let alone the national living wage; domiciliary care staff are not being paid for the time that it takes to travel between visits; and staff on zero-hour contracts—Unison estimates that there are about 300,000 of them—are facing uncertain and often disrupted hours.

Unison has been pushing an ethical care charter for home careworkers and a residential care charter, too—here I should mention the “sleep-in” staff who are not being paid the national minimum wage. I am sorry that the Minister is not in her place at present, because when she touched on this matter she appeared to suggest that the Government are looking at legal ways not to pay sleep-in payments at the national minimum wage rate. Perhaps she, or one of the other Ministers, could correct me if I misheard that point. These staff deserve, and are entitled, to be paid for the work that they do.

It is no wonder that staff turnover is huge in the sector, varying from 31.8% in the residential sector to 44.3% in domiciliary care. These are not just trade union figures. Yesterday, the Health and Social Care Committee and the Housing, Communities and Local Government Committee, which are working together on adult social care, heard from the chief executive of Care England, the providers’ body, who also highlighted the huge problem of turnover in staff. This is not good for employers and it is certainly not good for the people for whom these careworkers work.

This is no way to provide care for the most vulnerable people in our communities—they deserve the most compassionate care that meets their needs—or to treat the staff who provide that care. This is not just about the staff. They are under such pressure because, year after year, this Government have cut funding to local councils, which provide the care, at the same time as those councils face a huge rise in demand. We know that the care market itself is fragile and failing.

Our social care system is not working as it should do. If we are to make it work, we must ensure that funding is provided now and that the care staff are treated properly. We must give social care equity with NHS services. Our older people, and those who care for them, deserve nothing less.

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[Jackie Doyle-Price]

I do not disagree with that point. That is why we need to embark on a process of reform and really get it right. We are embarking on the process on that basis.

A number of Members, including the hon. Member for Blaydon (Liz Twist), mentioned sleep-ins, and I just want to restate what was said, because it seems to have been misunderstood. We fully recognise the pressure on the sector resulting from the ruling on sleep-ins and the fact that the historical liabilities could be a problem. We are working closely with providers, in liaison with the European Commission, to come up with a solution. Hon. Members will understand that the matter is too commercially sensitive for me to say any more than that—[Interruption.] We are working with providers and meeting them on a regular basis.

[Liz Twist]

I understand what the Minister has just said about sleep-ins and that she is working with providers. We all understand the pressure on those providers, but I asked earlier, are we looking at a way to reward the staff properly for the work they do during sleep-ins, or are we trying to avoid the question?

NHS Wholly Owned Subsidiary Companies

Liz Twist Excerpts

Tuesday 6th March 2018 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered wholly-owned subsidiary companies in the NHS.

It is a pleasure to serve under your chairmanship, Mr Hollobone. I am glad to have secured this albeit brief debate on the issue of NHS wholly owned subsidiaries, and this fairly recent but rapidly developing situation spreading across the NHS. What are these companies? They are organisations set up by NHS trusts as subsidiary companies to the trust, into which a range of NHS facilities management staff are transferred. When I say facilities management staff, I mean all the porters, cleaners, catering staff, estates and maintenance staff, and others who keep our hospitals going. Those staff are an essential part of the NHS.

[Rachael Maskell (York Central) (Lab/Co-op)]

York Teaching Hospital is about to enter into an alternative management company for the facility staff there. Those are staff that want to work for the NHS, not least because they get the benefit of NHS terms and conditions and pensions. Does my hon. Friend agree that the loopholes in the taxation of the NHS need to be addressed so that those people can remain working for the NHS?

[Liz Twist]

I most certainly do agree with my hon. Friend. We know that NHS trusts are under incredible financial pressure and are looking for ways to stretch the available funds. Some trusts have seen wholly owned subsidiaries as a way of reducing costs. Those trusts include the Gateshead Health NHS Foundation Trust, which provides excellent hospital services to many of my constituents.

The cost savings come about in two main ways: through saving VAT and by saving on staffing costs. For some, there may be a third area of income—advising other NHS trusts on going down the same path, which is one of the reasons why they are spreading across the country. In November 2017, the then Health Minister, the hon. Member for Ludlow (Mr Dunne), stated that:

“NHS Improvement is aware of 39 subsidiaries consolidated within the accounts of foundation trusts”—[Official Report, 14 November 2017; Vol. 631, c. 129.]

We know that more are being created even now.

[Jim Shannon (Strangford) (DUP)]

The issue of pensions is very much at the forefront of the minds of myself and others in this House. Does the hon. Lady agree that it is essential that staff working through the front door of the NHS or the back door of the wholly owned subsidiary company must be entitled to retain their NHS pension? Any attack on the pension scheme must be wholly rejected and the trusts must all be made to understand the position on pensions when these types of actions are taking place.

[Liz Twist]

I most certainly do agree, not just for pensions but also for terms and conditions.

What is the problem with these companies? First, it is that they come at a price, which for the most part is met by the staff who work for them. Secondly, the VAT saved by trusts with these companies is not new money coming into the NHS—the money that trusts save will be lost elsewhere in public services. Already, the Department of Health and Social Care has reminded trusts by letter that they should not engage in any activities that may be construed as tax avoidance, and the loophole could be closed in the future. Thirdly, the establishment of wholly owned subsidiaries leaves the services open to privatisation in the future, continuing the fragmentation of our NHS.

[Alex Cunningham (Stockton North) (Lab)]

The North Tees and Hartlepool NHS trust set up a limited liability partnership last week. Even according to its own published material, it provides no guarantee of job protection beyond a few months and will create a situation with different employees on very different terms and conditions. Is this not all about Government cuts? Does my hon. Friend not agree that we could see even more staff transferred into this sort of arrangement in order to meet the Government’s cuts agenda?

[Liz Twist]

I most certainly do agree. I think this is the start of a very worrying process, not just for facilities management stuff but potentially for other staff.

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

My hon. Friend is being very generous in taking interventions. Unite points out that over the past five years, more for-profit companies have won contracts to run NHS services, with the total value of contracts awarded in 2016-17 standing at a staggering £3.1 billion. Does my hon. Friend agree that the Government must compel Her Majesty’s Revenue and Customs to close this tax loophole, so that NHS trusts are not forced to consider outsourcing NHS services?

[Liz Twist]

I most certainly agree that the issue is a dangerous one that needs to be looked at, and it is a very worrying one because, whatever happens, the staff who have transferred are in a very difficult position.

In the longer term, the establishment of the wholly owned subsidiaries leaves services open to privatisation in the future, continuing the fragmentation of our NHS, which is not in the long-term interests of all who use the NHS. There is no evidence that the plans will improve efficiency or productivity in the NHS. They exploit a tax loophole and seek to exploit the future workforce.

[Dr Dan Poulter (Central Suffolk and North Ipswich) (Con)]

The hon. Lady and her colleagues are right to highlight the fact that the financial pressure on the NHS is the main driver for this situation. Does she agree that it is very difficult in some services to differentiate between administrators and back-office services, and frontline services? Sometimes, administrators and back-office workers are embedded in clinical teams, and this actually worsens fragmentation and makes it much more difficult to deliver high-quality patient care.

[Liz Twist]

The hon. Gentleman makes an excellent point. NHS staff, whatever their job, are all part of a team that delivers a service, and they all work together. For example, the catering and cleaning staff who looked after my mum’s hospital ward when she was in hospital recently were also a part of the NHS caring process. I think that is a really important point.

[Judith Cummins (Bradford South) (Lab)]

One of the major problems with the creation of these wholly owned companies is that they lead to a two-tier workforce in which often the lowest paid staff, such as domestics and security guards, are on worse terms and conditions than other staff. Does my hon. Friend agree that that represents a race to the bottom and is not just bad for those moved over to the new companies but bad for the NHS overall?

[Liz Twist]

I most certainly do agree, and I will expand on that point shortly.

I want to speak about the impact on staff—some of the same staff we have all been praising in recent days for turning up to work in the snow and coping when we have the only too frequent crises. They are an integral part of the NHS team, as the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) said, making it possible for nursing and medical staff and other allied health professionals to do their bit in caring for patients.

On transfer to a wholly owned subsidiary company, staff already employed by the trust will be transferred on their existing terms and conditions. That is, on “Agenda for Change” terms and conditions and pay rates, negotiated nationally and checked to ensure equal pay for work of equal value. They will retain their membership of the NHS pension scheme and a set of decent terms and conditions applying to all NHS staff. The main way that trusts can make savings through these companies is by employing new staff on different, and worse, terms and conditions.

[Mike Hill (Hartlepool) (Lab)]

On the point made by my hon. Friend the Member for Stockton North (Alex Cunningham) about North Tees and Hartlepool Solutions, as the LLP is called, does my hon. Friend agree that its immediate intention to introduce worse terms for new starters sets a dangerous precedent?

[Liz Twist]

I very much agree. It is a very dangerous precedent that does not respect the rights of those staff.

[Alex Cunningham]

Further to that point, is my hon. Friend aware that the question and answer document produced by the North Tees and Hartlepool NHS Foundation Trust says that NHS staff transferred into the new company can expect a pay rise this year, but nothing is guaranteed in the future? They are already seeing their future conditions eroded, unless the new company awards them the pay rise they will get under the current system.

[Liz Twist]

That is absolutely correct, and I have raised with my local trust the potential move away from NHS pay rises.

The main way trusts can make savings is by employing the new staff on worse terms and conditions, which means lower pay rates, less holiday, inferior sickness schemes and no access to the NHS pension scheme. As colleagues said, even transferred staff may be moved on to the worse terms and conditions over time. Trusts are doing that to the lowest-paid workers, who are essential to keeping our hospitals going.

[Mike Amesbury (Weaver Vale) (Lab)]

Does my hon. Friend agree that doctors and clinicians should prescribe only medicines that have a strong evidence base and have been shown to be effective in trials? On that basis, does she agree that wholly owned subsidiaries for the treatment of illness would be ineffective?

--- Later in debate ---

[Liz Twist]

I certainly agree that this is the wrong medicine for the NHS’s problems, which, as hon. Members said, derive from the pressure on NHS finances and the underfunding of the NHS.

[Rachael Maskell]

The last time there was a segmentation of facilities management, we saw the rise of MRSA and other communicable diseases, so the evidence shows that this is a bad move.

[Liz Twist]

That is a very valid point, and it must be considered carefully.

We are creating divisions between staff in the facilities management companies and other NHS staff by introducing a two-tier workforce, which health service unions such as Unison—my union—have worked hard to move away from. The setting up of these wholly owned subsidiaries is a retrograde step. It insults and undervalues the staff who do essential but less visible jobs in the NHS. It deprives them of the pension scheme that their colleagues have access to and exposes trusts to equal pay claims. Equally important, it risks breaking up our NHS—perhaps not today, but in the near future.

I have been looking at the health press in preparing for this debate, and I have seen that there are plenty of companies out there willing to advise on setting up NHS subsidiary companies and look at the benefits of such companies. There are no such advantages. There is no reason why NHS staff working together cannot produce a better NHS. Indeed, they are doing so all over the country. We need to stop this trend of establishing wholly owned subsidiaries in the NHS. We must respect all our hospital staff and prevent the fragmentation and privatisation of our NHS.

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[Stephen Barclay]

The trust has stressed that the organisation remains in public ownership. Let me deal with the hon. Gentleman’s substantive point—it was also raised by the hon. Member for Bradford South— that this is about exploitation. I discussed that point with the trust ahead of the debate.

Previously, the trust had difficulty in attracting and retaining quality maintenance staff because the salaries paid in the local market were about £19,000 per annum. Under the subsidiary company, multi-skilled craftspeople are employed at about £25,000 per annum, plus a performance bonus, attracting better-qualified staff and ending retention issues, in exchange for the fact that they do not have access to the NHS pension.

[Liz Twist]

rose—

[Stephen Barclay]

I will happily give way to the hon. Lady in due course.

That is not about exploitation; it is about empowering members of staff. They get higher pay in the short term in return for a less generous pension. The hon. Member for Stockton North might disagree—

[Stephen Barclay]

I signalled that I will give way to the hon. Member for Blaydon. She called the debate, so she should go first.

It is not accurate to say that this is simply about exploiting people if their base salary is increasing from £19,000 to £25,000, as it is in that trust. One can look at the wider bundled package of benefits and total remuneration, but one cannot describe a salary increase of £6,000 as exploitation.

[Liz Twist]

The Minister is raising an issue of great concern to me, which I have discussed with the chief executive of the foundation trust, so this is not coming as news to him. If we move away from a structured pay system and give additional salary payments over and above allowed recruitment and retention bonuses, we are laying the trust or the organisation open to the claim that they are not providing equal pay for work of equal value. A huge amount of work went into creating “Agenda for Change” to avoid exactly that problem and to address recruitment and retention.

[Stephen Barclay]

The hon. Lady is ignoring the fact that that already happens in the NHS, for existing trust staff: some staff opt out of the NHS pension, and not all the staff who TUPE-ed across in this arrangement were in the NHS pension. Once again, those on the Labour Benches want to deny the choice and options that apply to NHS staff.

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[Stephen Barclay]

Within the NHS as a whole—nothing to do with subsidiaries—there is a range of treatment of staff on pensions. First, there are the legacy pension arrangements for staff in previous schemes and, secondly, people opt out of existing pension arrangements in the NHS. Again, it is a complete mischaracterisation of this debate on subsidiaries to suggest that there are differences. The point, however, is that there are also differences in pay, as has come out of this debate: the maintenance staff for whom the trust is paying a premium can be paid so because of the subsidiary.

[Liz Twist]

I thank the Minister for giving way—the only way I can get a response in is by intervening. I have a few separate points. First, on the Labour legislation, is it not strange that the subsidiary companies have only started to appear in this form since 2014? As my colleagues said, that is a reflection of the fact that we have a shortfall in funding for the NHS. Secondly, I want to mention the path lab example the Minister gave. As I said in my speech, there is no reason why existing NHS staff in the NHS trust cannot make the improvements—they do all the time—

Motion lapsed (Standing Order No. 10(6)).

Hospital Car Parking Charges

Liz Twist Excerpts

Thursday 1st February 2018 Commons Chamber

[Bambos Charalambous (Enfield, Southgate) (Lab)]

I congratulate the right hon. Member for Harlow (Robert Halfon) on securing this important debate.

It is clear from hon. Members’ speeches that the scandal of hospital parking charges must come to an end. Gravely ill people and people visiting relatives while in a state of distress should not be treated as cash cows by hospital car park operators. It is shocking that half of all trusts last year charged disabled people to park in some or all of their disabled parking spaces. We need to address the ridiculous inconsistency whereby hospital parking is mainly free in Wales and Scotland while trusts charge for parking in Northern Ireland and England. It is time that all hospitals abolished parking fees. Drivers must not be punished for being sick, visiting loved ones or attending medical appointments. People do not choose to be ill and should not be asked to pay for a no-choice hospital visit.

Many of my Enfield, Southgate constituents have approached me about this issue. A mother contacted me to say that after her husband took their son to the North Middlesex University Hospital accident and emergency unit with breathing difficulties in the middle of the night, he was later presented with a parking charge notice. I do not believe that people rushing to hospital with gravely ill children should be put into the position of having to worry about such matters. Imagine if my constituent had spent extra precious moments scrambling for change for parking while his son struggled to breathe. Would that have been a sensible and responsible thing for the parent of a seriously ill child to do? Of course not. That is exactly why we must get rid of these charges.

I have also been contacted by a father who had to take his young daughter to the emergency department. Throughout the evening and into the night, my constituent had to leave his daughter to feed more money into the car park meter because she was being kept in for such a long period of time—it ended up being overnight. My constituent kept paying into the machines, which failed to give him receipts when requested, leaving him unsure how much time he had left. My constituent reported seeing other people in various states of distress walking around the car park and seeming unsure of what to do. Two weeks later, my constituent received a notice telling him that he had not paid for all the time that he had been in the car park. Again, we must ask whether this is an appropriate way to treat the parents of very ill children.

We have all heard in the press about desperately ill patients who have been forced to quit work and left with bills for hundreds of pounds due to their frequent visits to hospitals. Then there are hugely unfair cases of NHS staff who have had parking charges deducted from their wages, but then have been unable to get a space and have been fined for parking in the wrong bay. Several elderly constituents have contacted me to say that they face relatively high parking charges for their regular hospital attendances.

This Sunday, 4 February, is World Cancer Day, and many of us know people who have had treatment for cancer. Anyone who knows the effects of chemotherapy will be aware of how debilitating the treatment can be. People often need a carer to help them to make the journey home. Considering the frequency of treatments for cancer and other illnesses, surely car parking charges are nothing more than a tax on the sick. As the hon. Member for Telford (Lucy Allan) pointed out, many people have no choice but to drive to their local hospital due to the infrequency of public transport.

[Liz Twist (Blaydon) (Lab)]

My hon. Friend talks about travel difficulties. Does he agree that reductions in the number of bus services in many areas mean that there is no alternative to parking in hospital car parks? In constituencies such as mine, which has no hospital, that means frequent journeys for people who require treatment.

[Bambos Charalambous]

My hon. Friend makes an excellent point. People in rural areas or who live far away from their local hospitals are unfairly affected by having poor transport networks to ferry them to hospitals, so they have no choice but to travel by car.

The right hon. Member for Hemel Hempstead (Sir Mike Penning) made the excellent point that other emergency workers are not being required to pay to park at their police or fire stations. In addition, hospital staff, by taking up parking spaces, are reducing the number of spaces for patients and visitors. NHS staff should be able to park for free, but they should also be able to afford to live nearer the hospital. It is therefore ironic that we are in a situation in which NHS trusts are forced to sell land that could have been used to house NHS staff locally.

Another pressure on North Middlesex Hospital has been the fact that the closure of the accident and emergency unit at Chase Farm has resulted in far more visitors to its A&E unit. Those additional visits meant that, between Christmas and new year, the hospital ran out of acute beds. One can only imagine how busy the hospital car park was during that period.

Many hon. Members have made excellent contributions about the need for the Government to abolish car parking charges. It is time that those unfair charges were scrapped and the NHS properly funded. For the sake of NHS staff, parents and visitors, I ask the Minister to bring forward measures to scrap car parking charges as soon as possible.