British Sign Language Users: Access to NHS Services

Debate between John Howell and Catherine McKinnell

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?

Safeguarding Adults with Learning Disabilities

Debate between John Howell and Catherine McKinnell

Tuesday 17th October 2017 Westminster Hall

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

I beg to move,

That this House has considered supporting and safeguarding adults with learning disabilities.

It is a pleasure to serve under your chairmanship, Mr Wilson, as we consider this hugely important issue. How we better support and safeguard adults with learning disabilities is a subject on which I have been seeking to secure a debate for some time, following the most appalling case involving a young man with learning disabilities from my constituency and his violent death back in June 2015.

The circumstances leading up to Lee Irving’s killing have been the subject of a safeguarding adults review which was published in June 2017, following the trial and sentencing of those responsible which finally concluded in December 2016. I will return to Lee’s case and the outcome of the review in more depth, but first I will briefly provide some context to the debate.

About 1.4 million to 1.5 million people with a learning disability are estimated to live in the UK, of whom some 350,000 have a severe learning disability. The charity Mencap, which describes itself as the leading voice of learning disability, replies to the question, “What is a learning disability?” by explaining:

“The answer is that it’s different for every person who has one. But there are some things that are true for everyone with a learning disability, and some common (and not so common) conditions that will mean you have a learning disability.”

Mencap goes on to state:

“A learning disability is a reduced intellectual ability and difficulty with everyday activities—for example household tasks, socialising or managing money—which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.

The level of support someone needs depends on the individual.”

Importantly, Mencap concludes:

“It’s important to remember that with the right support, most people with a learning disability in the UK can lead independent lives.”

I saw that for myself in Dinnington in my constituency when I visited the home of the then 18-year-old Joe to hear about how he was being supported by the national charity United Response during the transition from childhood to adulthood. That involved providing Joe with tailored assistance in a supported housing setting to help master tasks such as managing money, basic cooking skills, cleaning the house, keeping up with the laundry, managing his coursework on his construction course at the local mainstream college, and being able to use public transport safely.

One of the concerns that Joe raised with me during that visit was his disappointment that he had been prevented from securing an apprenticeship because he was unable to achieve the required grade C in maths and English at GCSE. I am pleased, as one of the co-chairs of the all-party parliamentary group on apprenticeships, that that requirement has recently been lifted for people with learning disabilities, following a review conducted by the hon. Member for Blackpool North and Cleveleys (Paul Maynard).

I am regularly lobbied by constituents with learning disabilities who, with the support and encouragement of the Newcastle-based charity Better Days, are able to send me easy-read letters about issues of concern, such as the lessons to be learned from the independent review of deaths of people with a learning disability conducted following the tragic death of Connor Sparrowhawk, or the Government’s decision no longer to provide funding to the National Forum of People with Learning Disabilities, which meant it closed in March 2017, having been operational since 2001.

There is a variety of good support out there, but we all know that many people with learning disabilities, and their families and carers, will face a series of enormous challenges, barriers and indeed discrimination throughout their lives, all of which inevitably puts a great deal of strain on family relationships. What do those barriers involve for people with learning disabilities?

Mencap highlights that children with special educational needs are twice as likely as other children to be bullied regularly; 40% of disabled children live in poverty; and 75% of GPs have received no training to help them treat people with a learning disability. The House of Commons Library has noted the evidence that people with a learning disability experience inequalities in healthcare and the fact that, on average, men with a learning disability die 13 years sooner and women with a learning disability 20 years sooner than those without learning disabilities.

Learning Disability Today has reported on a survey that found that almost two thirds of parents of children with learning disabilities said that they missed social engagements in the past year due to the fear of how other people would react to them; one in four young people with a learning disability had been bullied by members of the public at nightclubs or concerts; and only 30% of people would feel comfortable sitting next to someone with a mild learning disability at a show or a concert.

[John Howell (Henley) (Con)]

I hear what the hon. Lady is saying about GPs. Does she think that it would be useful if training were made available to MPs and their staff to deal with such situations?

[Catherine McKinnell]

That is an interesting suggestion. As a constituency MP, I work closely with the organisations I have mentioned so that I may correspond with and represent people with learning disabilities. There are local solutions and, potentially, national ways to support MPs. That is a good suggestion to ensure that those voices are heard in Parliament, and the intention of this debate is very much to give voice to some of the concerns. I am sure that other hon. Members are present for the very same reason.

The issues that I have outlined are just some of the frankly depressing ones faced by people with learning disabilities. Such issues were commented on by Mencap in its response to the Equality and Human Rights Commission report, “Being disabled in Britain: a journey less equal”, which was published earlier this year. In responding to the EHRC report back in April, Mencap commented:

“Rather than move forwards in the past 20 years this report shows how inadequate action and a constant stream of cuts have condemned disabled people to a life of poverty and inequality.

With the employment rate for people with a learning disability currently standing at less than 6% and with cuts to Employment Support Allowance coming into effect this week, it’s not hard to see why so many disabled people are struggling to find money for things as basic as food. People with a learning disability also face inadequate housing, poor access to health care and a society that misunderstands them.”

One challenge facing people with learning disabilities and their families is of course being able to access the right social care support at a time when adult social care budgets are at breaking point after years of punitive cuts to local authority funding since 2010, combined with rising cost pressures. The Local Government Association outlines that some 127,725 adults in England under the age of 65 were receiving long-term social care from their local council for a learning disability in 2015-16, meaning that about one third of councils’ annual social care spending, or approximately £5 billion, is used to support adults with learning disabilities.

The LGA also highlights, however, that the number of adults with a learning disability needing social care is set to rise by 3% a year, piling further pressure on local authority finances. Overall, councils face a £2.3 billion shortage in funding by 2020. I therefore strongly urge the Chancellor to address this issue next month as part of his autumn Budget, as well as the ongoing and serious concerns about the potential historic and future costs associated with sleep-ins, following the change in Government guidance on them, which have significant implications for the future provision of support to adults with learning disabilities.

As I said, there is a particular reason that I secured this debate, which I have been trying to do so for several months. Undoubtedly, all Members of Parliament frequently have to handle very distressing issues, and I have dealt with a lot.