Mental health support for Welsh deaf people is a 'postcode lottery'

An investigation by Newsquest’s Data Investigations Unit has found widespread frustration over poor mental health provision for deaf people, and yet another ‘postcode lottery’ across England and Wales.

In Wales, services have been described as “very behind” while local health boards have been accused of making “sweeping statements” about what makes a service accessible for British Sign Language (BSL) users.

Counselling sessions going ahead using pen and paper, relying on lipreading, and a lack of deaf cultural awareness are just some of the frustrations deaf people shared with Newsquest.

They are exasperated at having to fight the system for specialist support with clinicians who understand deaf culture or are fluent in BSL.

Beth's story

Beth Williams, 28, from Swansea, said: “Deaf people are in desperate need for mental health services that actually benefit them. It’s sad there are people like me who go years without help.

“Services for the deaf in Wales definitely need to increase and improve. It would be ideal to have more mental health professionals who are trained to work with deaf clients.”

Beth Williams, 28, from Swansea

Beth was diagnosed with depression at 17, but later learnt she had borderline personality disorder and complex post-traumatic stress disorder, amongst other mental health conditions.

In 2013, she began cognitive behavioural therapy (CBT) under a deaf service but with a hearing therapist, who travelled from England to see her.

“I have too many deep-rooted issues that couldn’t be resolved or managed through CBT,” she said.

“The therapist kept commenting on how well I speak for a deaf person and how intelligent I am, which didn’t feel good.

“Last year, I met with a hearing psychiatrist and it didn’t go well. She knew nothing about deafness, so I guess she couldn’t make the connection about being deaf being one of my core issues, but I met another hearing psychiatrist a few months later who I was able to open up to more.”

Beth is now under the care of Deaf4Deaf – one of just two organisations, including SignHealth, which can offer UK-wide mental health services in BSL.

She discovered the organisation while “desperately Googling” for deaf-aware therapists.

She said: “I basically went 16 or so years without the correct support for my diagnoses, and of course, me being deaf made it even more difficult to get the correct support.

“The therapist I have now is so lovely and it’s incredible being able to talk to someone who actually gets it. She has a cochlear implant too.

“BSL-trained counsellors are very beneficial – I’m not denying that – but it’s even better if they’re deaf.”

Mental health. Picture: Pixabay

Are deaf people more at risk of suffering mental health problems?

Deaf people are nearly twice as likely to experience mental health issues at 40 per cent compared to 25 per cent for the general population.

In response to Newsquest’s Freedom of Information request, five of seven health boards claimed all their services were fully accessible to deaf, BSL users.

Four health boards referenced using interpreters and just one of those authorities acknowledged that interpreters posed challenges in the delivery of mental health services.

Betsi Cadwaladr University Health Board responded: “BSL translators can be arranged to work alongside the client and clinician, but we’ve found this isn’t an option that works well and most people from the deaf community ask for a BSL-proficient clinician, of which we have none.

“Therefore, these cases, once identified, usually access help outside of BCU via the individual patient funding request (IPFR) route.”

Former chief executive of Betsi Cadwaladr University Health Board, Gary Doherty

What is interpreted counselling?

Interpreted counselling involves a three-way relationship with the client, therapist and interpreter.

This can pose several challenges such as: an interpreter not being booked and the session being delayed or going ahead via sharing notes, or the client discovers they know the interpreter and becomes uncomfortable to continue.

An interpreter's point of view

An interpreter from England, who asked not to be named, admitted he has reduced the time spent interpreting for therapy appointments.

He described how he would become a “co-counsellor” and if the professional did not understand deaf culture, he would be relied upon as an expert.

He said: “What I’ve observed from one-to-one therapy sessions with an adult is they switch off a little because there’s not an instant rapport. The deaf client must build a rapport with both me and the counsellor.

“The counsellor won’t always communicate directly with the deaf patient either, so they’ll ask me – “Can you ask how they feel?” or “Find out if they…” for example – rather than using me to just be that deaf person’s voice.

“Straight after the session, the client might then start telling me what they should have communicated with the counsellor. Or they begin talking about their problems before we go in.

“Naturally, I’m someone who’s using their language so they sometimes speak about their issues one-to-one with me, rather than waiting for the therapist.

“Having an interpreter in therapy sessions is certainly not ideal.”

Mark Drakeford AM, then Minister for Health and Social Services, launched the All Wales Standards for Accessible Communication

The All Wales Standards for Accessible Communication outlines the legal duty for public bodies to be “proactive in making reasonable adjustments to ensure equality of access to healthcare services for disabled people”. This is covered under the Equality Act.

One of those reasonable adjustments is to provide a BSL interpreter, which one industry insider explained can be used as a loophole for authorities to prove they have met their legal duty.

Research co-authored by Christopher Shank, of Bangor University, highlighted that neither written information nor lipreading are reasonable adjustments for deaf people to access health services.

The report said a common misunderstanding is that profoundly deaf people, whose first language is often BSL, can read English.

Reading or lipreading English, which is grammatically different to BSL, can be like learning a second language – one deaf woman told us.

'There needs to be a long-term well-resourced plan'

Dr Julia Terry, a member of the All Wales Deaf Mental Health and Wellbeing Group, disputed the accuracy of “corporate replies” given by Welsh health boards.

Dr Julia Terry wants to see more action taken for deaf people

She said: “Health Boards make sweeping statements about all mental health services being accessible to BSL users, but are there any BSL-fluent clinicians? I don’t believe there are.

“Interpreter services can be accessed by everyone in principle, yes, but locally, that’s simply not the case. Lots of friends and family are still interpreting for deaf people, which isn’t appropriate.

“The arrangements we have in Wales can work really well, but sometimes they fall down at the eleventh hour. This is a significant factor as to why a majority of deaf people don’t engage with health services, which has a huge impact on their mental health.”

The BSL Charter was drafted in 2003 by the British Deaf Association.

Originally, it was aimed at council services to improve access and rights for sign language users, but has since expanded to include other public, private and voluntary sectors.

Cardiff and Vale was the first health board to sign the charter in 2019.

A copy of the signed BSL charter. Picture: Cardiff and Vale University Health Board 

Dr Terry added: “There needs to be a long-term well-resourced plan in England and Wales, led by the Government, right across the board from education to employment and primary healthcare.

“It needs to be a joined-up approach that’s managed and resourced for the long term – a clear 10-year plan with outcomes and a commitment to this, which involves BSL.

“Wales is very behind here. Three local health boards have signed the BSL Charter, which is noble, but it’s the resource to commit to this which is important to see in real terms. In Scotland, the charter has been made legislative, but this isn’t the case across the rest of the UK.

“There’s no action being taken for the needs of deaf people – not at all.”

Which health boards fund talking therapies for deaf patients?

If talking therapy with a mainstream, hearing-led provider is unsuccessful, only then do deaf patients have the option to apply for alternative support through an individual patient funding request (IPFR).

The service they see is dependent upon which health board the patient is under.

IPFR requests explained

Any patient can make an individual patient funding request if a doctor believes their clinical circumstances are clearly different to other patients with the same condition.

Or when there is a clinical reason the patient would benefit from a treatment or service not routinely offered by the NHS.

The application will be considered by an independent panel which has not been involved in the patient’s care.

Both Cwm Taf Morgannwg UHB and Powys Teaching Health Board stated that deaf patients who need referrals for talking therapies “aren’t subject to individual patient funding requests”.

Their FOI response added: “To ensure there is fairness and equity in terms of the provision we provide to patients with and without hearing loss, all patients are required to be assessed by the local team.

“For patients with hearing loss, this will be via an interpreter in the first instance and, if deaf counselling is deemed clinically appropriate, the clinician can seek prior authorisation to refer the patient to a deaf counselling provider.”

Just three health boards made it possible to total the number of IPFR applications made by deaf patients and BSL users for specialist mental health services between 2015/16 and 2018/19.

Cardiff and Vale, and Swansea Bay, received zero applications of this nature.

• 2015/16 – 3
• 2016/17 – 5
• 2017/18 – 4
• 2018/19 – 5

Dr Terry, also an associate professor at Swansea University, challenged the figures, which she said do not reflect the true number of deaf people seeking mental health support.

Although there are no definitive statistics on the size of the deaf population in Wales – Action on Hearing Loss say about 575,500 people in Wales are deaf or have hearing loss – as much as the populations of Cardiff and Swansea combined.

“On the surface, with the figures provided, it doesn’t look like we’re talking about many people, but that’s simply not the case,” Dr Terry added.

“Health boards only get a small number of people who request specific deaf counselling or deaf mental health support, or challenge funding decisions, or even know what they might be entitled to, so the data is just the tip of the iceberg.

“The deaf people who have got through all the barriers to accessing health services to then arrive at the point of applying for funding, is only a small fraction of the people affected.”

Speaking about the difference in provision across the UK, Paul Redfern, general secretary of the British Society for Mental Health and Deafness, believes England offers the most.

He said: “The provision in England is probably the most advanced of all the UK.

“Northern Ireland and Scotland have limited direct services for deaf people while Wales currently has no specialist service, which may change in the near future with some health boards.

“For Wales, the real issue is there’s no routine gathering of information about patients, especially deaf BSL users.”