Health Visitors (England)

John Howell Excerpts

Wednesday 23rd October 2019 Westminster Hall

[Tim Loughton]

Again, I ask the hon. Gentleman to be patient, because I will come on to all that. I realise that he wants to put on the record his tribute to health visitors in Eastbourne, as do I—as someone who was born in Eastbourne and had wonderful health visitors, I am sure, albeit 57 years ago now.

The one thing that all these problems, and a lot more problems I have not mentioned, have in common is that they come under the remit of the health visitor, to some extent or other. The health visiting service provides an important safety net for infants and young children—as well as mums and dads—who are at particularly high risk of having their needs missed, as they are not visible in the same way as children who are accessing an early years setting or a school, for example.

[John Howell (Henley) (Con)]

Will my hon. Friend give way?

[Tim Loughton]

Another one? Yes, why not?

[John Howell]

My hon. Friend is making a very good speech—

[Tim Loughton]

But hon. Members keep interrupting it!

[John Howell]

I am very pleased to briefly interrupt him my hon. Friend. I pay tribute to the health visitors in my constituency. Is it not an important role of theirs to ensure that health inequalities are drummed out of the system?

[Tim Loughton]

That is a serious point; my hon. Friend is absolutely right. Health inequalities are still a big problem in this country, and those professionals on the ground, not least health visitors, are the first to come face to face with them and have the practical means, in many cases, to do something about them.

Oral Answers to Questions

John Howell Excerpts

Tuesday 23rd July 2019 Commons Chamber

[Caroline Dinenage]

The hon. Lady is absolutely right. One of the biggest issues we have had with people with learning disabilities and autism ending up in in-patient settings is a lack of community provision. That is why the NHS long-term plan commits to an extra £4.5 billion a year for primary and community health services, and local areas will be expected to use this investment to develop the sort of specialist services and community crisis care that will help divert people away from in-patient care settings.

[John Howell (Henley) (Con)]

8. What steps his Department is taking to help prevent mental health illness among young people.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

We are committed to improving early intervention and prevention to ensure that young people with mental health problems do get the best start and the earliest possible treatment. To that end, we are introducing new school-based mental health support teams. The first 59 of these will start being operational by the end of December this year. The next wave of 124 more teams was announced on 12 July.

[John Howell]

With half of all lifetime cases of mental ill health beginning at the age of 14, will the Minister say how well the training promised to constituencies such as mine will help to stop these problems worsening as people get older?

[Jackie Doyle-Price]

My hon. Friend is right: people with mental health conditions do tend to develop them as children. Clearly, the earlier we can give them support to help them manage those conditions, the better for their long-term wellbeing. Equally, however, we need to make sure we have sufficient community services when they leave school and get older, so that having invested in their wellbeing, it can be continued through later life.

Batten Disease

John Howell Excerpts

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

There will be co-operation with other medicines agencies, and I have no doubt that future co-operation will also come under any agreement that we reach with our European partners following our withdrawal from the European Union.

[John Howell (Henley) (Con)]

Sadly, this is not the first time that we have been here discussing how to make a highly specialised drug available for people generally and the talks with companies. May I add my request to my hon. Friend to act urgently to ensure that the review of NICE is undertaken with speed and that the full range of appropriate stakeholders is included in the discussions to take NICE forward?

[Seema Kennedy]

I completely agree with my hon. Friend. I have answered debates here and in Westminster Hall about the medical treatments for rare diseases. To reassure both patients and their families and Members of this place, we need to ensure that the review of NICE processes is robust and transparent.

Cystic Fibrosis Drugs: Orkambi

John Howell Excerpts

Monday 10th June 2019 Westminster Hall

[John Howell (Henley) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bailey. My first introduction to cystic fibrosis came before I became an MP. I wrote some newsletters and did some public relations work for the Cystic Fibrosis Holiday Fund, the main objective of which was to provide holidays and ancillary facilities to under-18s who suffer from cystic fibrosis. On the basis of medical advice that was given in 2000, we now cannot take those children away together, so the fund spends most of its time generating respite break grants and providing the Family Revitalise programme. Those initiatives are both important, but do not compare with making available Orkambi or any of the other drugs that have been mentioned.

Two families in my constituency have children with cystic fibrosis. I have spent time with both families, and have seen that largely the children are happy, normal children who enjoy all the things that other children enjoy. Hanging over them, however, is the threat of a double-lung transplant just to stay alive.

Orkambi changes lives, and we need to look at ways that we can make it available. A number of structural difficulties were identified during the conversations that I have had on the matter. The first is one of commercial incentive and risk. To compound that point, one can look at the relative strength in numbers of those who suffer from diabetes or from cystic fibrosis: diabetes accounts for 4 million people, while cystic fibrosis accounts for only 70,000. A major hurdle is therefore already built in for those with cystic fibrosis to overcome. We should not forget that.

The issue of the time taken, which has already been raised, goes back to criticisms of the NICE process. The criticisms that I would make fall into three types: first, NICE adopts the same evaluation process for a drug that might treat tens of millions of people as it does for a drug that treats a few hundred thousand or, indeed, a few thousand. We need to bring home to NICE that that is not a right way to proceed.

Secondly, the same evaluation process is also used whether the drug is taken for a brief period or a long one—in other words, whether it is a short use cancer-related drug or, as in the case of Orkambi, it must keep being taken over many long periods. That factor needs to be built into any evaluation of the drug as well.

The third criticism that I would make of the NICE process is that it is too focused on short-term benefits, and not on long-term benefits, which we know that Orkambi can produce. As has been mentioned, the data released by Vertex show that after 96 weeks of treatment, the rate of lung function decline reduced by 42%. That is a major long-term thing to hang on to. Furthermore, the net value of Orkambi is hard to calculate and therefore to capture accurately. A number of direct costs need to be taken into account, such as the cost of hospitalisation, and there is evidence that Orkambi starts to reduce the number of other medicines that need to be taken.

We have heard that Orkambi is available in many other countries in Europe, although I hear that the Spanish Government are having difficulties with Vertex, in the same way as we are, over the availability of the drug. The agreement that was reached with Vertex to make Orkambi available was a disappointing affair. We need to put on the pressure to ensure that that happens and that generic drugs are brought forward to be used instead. The example often cited is Ireland—both families in my constituency mentioned the situation there—and it is interesting to note that success story of the use of Orkambi. It has been very successful there, and we should all take that to heart in making progress to ensure that young people suffering from cystic fibrosis have access to this drug.

Whorlton Hall

John Howell Excerpts

Thursday 23rd May 2019 Commons Chamber

[Caroline Dinenage]

Let me clarify what I said, because I think the hon. Lady might have slightly got the wrong end of the stick. I did not say that Cygnet was being put on a group that is investigating this situation. I said that a group was established to deal with the immediate problem as soon as the issue came to light. That immediate problem was the safety of the individuals living in this particular setting and the conduct of those whose behaviour had been so outrageous. At that point, we were told that 21 people had been suspended. The safety of the individuals living in the setting was therefore our immediate concern, as well as finding alternative places for many of them to go. At that point, there was an incident co-ordination group that included Cygnet because it is the owner, but that group was set up to deal with the immediate situation that needed to be dealt with very promptly.

[John Howell (Henley) (Con)]

The NHS has been using a system of ambulatory care, particularly to deal with elderly patients by treating them in their home, plus a hospital visit. Why has this not been rolled out quicker to those with learning disabilities and autism?

[Caroline Dinenage]

That is what we are looking towards, which is why the Government are putting so much more money—£4.5 billion of the extra investment in the NHS—into the sorts of community services that we need to make exactly that a reality. There are cases where people do end up in an in-patient setting, often because services have failed and their situation has almost reached crisis point. The transforming care and building the right support system that I spoke about earlier is all about ensuring that we get people out of those settings as quickly as possible and into the right kind of support in the community.

Medical Cannabis under Prescription

John Howell Excerpts

Monday 20th May 2019 Commons Chamber

[John Howell (Henley) (Con)]

I congratulate my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Gower (Tonia Antoniazzi) on securing this timely debate. Let me start by picking up on something that my hon. Friend the Member for Reigate (Crispin Blunt) mentioned: all we are talking about is medicinal cannabis. We are not talking about making cannabis available for general recreational use. I am sure that there are Members of the House who would have an opinion on that, and we could have a full debate on it, but we are talking only about use for medicinal purposes. The wording of the motion is very important. When I read it, I saw that it stressed the practicalities of getting cannabis medicines prescribed. It is not about the general issue—we had the debate on that and the Home Secretary reached his decision—but about the practicality of getting some sort of result.

I realise that this is not easy for the medical profession and that the Government have initiated a review of the barriers to clinically appropriate prescribing. That is a very important review to undertake. I am aware that the National Institute for Health Research is going to participate in the review, which is a positive step, and I will set out what I think are a couple of the barriers that prevent prescribing

What we are really waiting for is some NICE guidelines. I understand that they are coming, but they need to be brought along pretty quickly. We cannot wait for them forever, nor can the children who are suffering.

[Dr Cameron]

The hon. Gentleman is making an excellent point and an excellent speech, which relates to the practicalities for children in my constituency such as Cole Thomson. His mother, Lisa Quarrell, has been trying to get medicinal cannabis for him for some time. Not only does she have to battle his absolutely debilitating epileptic illness, which gives him multiple seizures every day, and to see the deterioration each day in his condition, but she has to battle the medical system, battle with financial costs and battle the Government as they take one step forward and two steps back, giving hope and then taking it away. It is too much and too traumatic for any family in that situation to cope with.

[John Howell]

I thank the hon. Lady for her excellent intervention, and I agree with much of what she said.

One of the main barriers that I see is the simple question of who is allowed to prescribe. The General Medical Council holds a list—a specialist register—of specialist doctors who are allowed to prescribe. Why do we have a specialist list, and why can only those on that list prescribe? Is it because people are nervous about their careers or other things? Why do we limit the number of doctors who can prescribe in this way? I have read claims that something like 110 patients have been prescribed the medicine, but from what has been said in this debate, I understand that only one has received it.

[Sir Mike Penning]

My hon. Friend gives me a great opportunity to correct Hansard—I have received the message that there are two, both prior to the 1 November decision. In other words, the Home Office specialist team gave it to two, whereas none has had it since the Department of Health and Social Care took this over.

[John Howell]

My right hon. Friend makes a valid point. The question is: why have so few—as he says, only two—actually received their medicine? Why has nobody else received them?

[Michael Fabricant (Lichfield) (Con)]

I have discussed this matter with Helen Stokes-Lampard, the chair of the Royal College of General Practitioners, and she makes the point that there is not training available for GPs to feel confident enough to prescribe this medicine themselves.

[John Howell]

I will come to the point about training in a moment, if my hon. Friend will be patient, but he makes a valid point.

I appreciate that we have to go carefully, in view of the harm that the unrestricted use of cannabis might do, but the number of people who have received their drugs is a mere pinprick on the surface of those who need them. I am not surprised people go abroad to get their drugs, because it is the only source.

[Sir Mike Penning]

A person can only go abroad if someone is paying for it—if they have reserves or a benefactor, if Grandma or Grandad is paying. If they do not have those things and are relying on the NHS, nul points—they don’t get it.

[John Howell]

I accept that point. In cases of children who need cannabis oil, I am aware of it being crowdfunded, which can be a valuable way of proceeding, but it seems a complete nonsense in a country that is proud of its NHS that people should have to go into the public arena to crowdfund a drug.

I have some questions about this short list that the GMC maintains of doctors who can prescribe medical cannabis. How accessible are these doctors, and what is the waiting time to see one? These are practical barriers to people getting the drugs they need.

A young girl in my constituency—her name is not important—has intractable epilepsy and there is a great hope that medicinal cannabis would improve the quality of her life. Many women who suffer the sort of pain and discomfort she suffers during her menstrual cycle take birth control pills, which eases the pain considerably, but she cannot do that because it reduces the efficacy of her epilepsy medication and leads to a radical increase in the number of serious fits. For Hannah—that is her name—her epilepsy is life-threatening, as she is in a high-risk group of epilepsy sufferers who could experience sudden unexpected death in epilepsy syndrome, and we ought to think about how we can make it easier for her to obtain these drugs and so make her life easier. I mention that because to make these points we need to bring this debate back to examples of real constituents.

My second point is that raised by my hon. Friend the Member for Lichfield (Michael Fabricant) about the availability of guidance and training. In respect of both, there is a great lack of information, and it is not just us who lack information; so does the medical profession. We should do all we can to increase doctors’ knowledge and awareness so that, among other things, we can broaden out that list and GPs and family doctors can have the information they need to make decisions. I have no problem with this being a clinical decision rather than a political decision.

[Crispin Blunt]

We are where we are only because a politician, when faced with the inhuman cruelty of taking away from two children medicine obtained overseas when they returned to the UK, in the end refused to do so and issued a special licence. If this medicine is outside the scope of conventional medicine and the conventional assessment of molecular-based medicines, something will have to give if we are to get the benefit.

[John Howell]

I agree with my hon. Friend. The in-principle decision has been taken and the practical decisions now have to be taken by clinicians who are willing and fully trained to prescribe. The press releases and parliamentary answers are full of talk about finding the limit to the use of cannabis as a medicine. I listened to an exchange—I cannot remember who it was with—on its use to treat pancreatic cancer. From memory, I think the Minister gave a rather mealy-mouthed response. We need to think about extending the limits to other diseases.

In conclusion, I go back to where I started and congratulate my right hon. Friend the Member for Hemel Hempstead on securing this debate, but the matter will not rest here. I do not think this will be the last time we have this debate. I hope we see some progress soon.

British Sign Language Users: Access to NHS Services

John Howell Excerpts

Wednesday 15th May 2019 Westminster Hall

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

I beg to move,

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

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

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

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

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

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

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

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

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

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

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

and,

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

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

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

[John Howell (Henley) (Con)]

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

[Catherine McKinnell]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another explained:

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

Another of Ellen’s friends commented:

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

Another stated:

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

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

[John Howell]

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

[Catherine McKinnell]

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

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

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

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

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

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

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

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

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

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

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

I find that statement deeply depressing.

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

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

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

She went on to highlight that

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

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

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

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

Learning Disabilities Mortality Review

John Howell Excerpts

Wednesday 15th May 2019 Commons Chamber

[Caroline Dinenage]

I thank the hon. Lady for her question. This very thorough consultation has received more than 5,000 responses. It has very recently concluded, and we are now going through those consultation responses, some of which are quite detailed. We hope to respond in the next two or three months to set out how we would like to move forward on this.

[John Howell (Henley) (Con)]

This question is similar to the “do not resuscitate” one. I am aware that a number of practitioners use seclusion, segregation and restraint against patients in the system. What is the Minister doing to stop that happening?

[Caroline Dinenage]

This is really important. We have seen an increase in reports of segregation and restraint, but that is partly because we have seen much better recording of the data. That is also very important, because we need to understand where people are being kept in seclusion or restrained inappropriately. The Secretary of State has asked the Care Quality Commission to review the matter and make recommendations about the use of restrictive interventions in settings that provide all sorts of residential care. The first part of that review will be reporting back very shortly.

Government Mandate for the NHS

John Howell Excerpts

Thursday 25th April 2019 Commons Chamber

[Stephen Hammond]

The hon. Lady will know that the Government have committed £33.9 billion up to 2023-24, and the first element of that has arrived this year. There will be, as I said earlier, publication of a Green Paper on social care and, combined with the comprehensive spending review, that will ensure that the Government will provide for the social care funding that is necessary.

[John Howell (Henley) (Con)]

Will the Minister recognise that the commitment under the long-term plan to ambulatory care, which is supported by the Royal College of Physicians, is helping patients receive the best form of care service in their own homes?

[Stephen Hammond]

My hon. Friend is right. At the heart of the long-term plan is the emphasis on primary care and prevention. Providing care for people in their own homes undoubtedly achieves better outcomes for patients and he is right to welcome it.

Mental Health Services: Leeds

John Howell Excerpts

Tuesday 23rd April 2019 Westminster Hall

[Fabian Hamilton]

Yes. I thank the hon. Lady for her point. That is one of the problems: it is a maze. If people are told to refer themselves through a website, which can then refer them to another organisation that is supposed to allow them to make an appointment, and they then leave a message on voicemail and it is never responded to, that is shocking in itself. The example my hon. Friend the Member for Leeds North West (Alex Sobel) gave of the ambulance and the waiting in A&E, and then the lack of credible resources and assistance from the mental health services, highlights the scale of the problem.

After the date for this debate was published, I was contacted by Healthwatch England, which told me that Healthwatch Leeds was about to publish a report on mental health in Leeds and that it would be happy for me to use some of the report’s data and conclusions in the debate. Unfortunately, owing to unforeseen circumstances, the publication of the report has been delayed, but to show that Andy Downey’s is not an isolated case, here is a quote from one of the 697 people in Leeds—I do not know his or her name—who gave evidence for the report during the first three months of 2019:

“I do not know what is wrong with the entire Trust. I had waited since February for a referral to the CMHT”—

the community mental health team—

“I was seen in August. I was discharged, told to talk to IAPT. IAPT has its own waiting lists. As a result of not being able to prove I accepted, I lost everything. I DID NOT REFUSE TREATMENT!! NONE WAS OFFERED!! Today I phoned the crisis team in tears, and they said ‘contact your GP in the morning’. I have no job, I have no money, I went through over 6 months waiting for a simple appointment. I am struggling, and the best the crisis team can do is say ‘contact your GP’. My GP referred me to the CMHT because I was suicidal. Can’t believe the crisis team said ‘tell your GP’. I have been telling my GP, who couldn’t handle it, so he sought help. Today I found out I lost my job, and I will soon be homeless, because my home is provided by my employer. I was suicidal and depressed before today... can’t the crisis team show some empathy and realise some things are a tipping point?”

[John Howell (Henley) (Con)]

I am not a Leeds Member, but what the hon. Gentleman has highlighted in that moving passage is the need for GP training in this area, right across the country. Is it not time that we got that training right?

[Fabian Hamilton]

I thank the hon. Gentleman for that important intervention. He is absolutely right. It is clear from what I, and all of us, have seen that all GPs need far better training in how to deal with mental health issues.