Why mental health support for 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.

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.

Jeanette Wright, a retired deaf awareness and sign language teacher, said: “I worry about deaf people. I’m sure lots don’t even bother to seek counselling because of the lack of communication support, especially if you’re someone who’s losing their hearing.”

Jeanette spent a year being counselled by a hearing therapist without an interpreter, after finally accepting she needed help for her mental health.

Jeanette Wright from Colchester

She lost her hearing at 33, after a bad sinus infection, and wears a cochlear implant.

“I have clear speech as I was born hearing, so communication was easy for the therapist but difficult for me, especially because I felt so low. I had to concentrate extra hard to lipread, but she was very patient and repeated herself when I had problems.

“I’m very lucky as my English skills are fine. Sadly, for lots of profoundly deaf people, their English is not. 

“Deaf people are lipreading a second language with English.”

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

Compared to 25 per cent of the general population, deaf people are nearly twice as likely to experience mental health issues at 40 per cent.

The NHS Standard Contract states providers must provide “appropriate assistance and make reasonable adjustments” for service users who have communication difficulties or who are deaf.

This line was quoted in part by 52 per cent (83) of the 158 CCGs which responded to Newsquest’s Freedom of Information request, asking which of their mental health services are fully accessible to deaf, BSL users.

Fifty-six per cent (89) referenced using interpreters and nine of those CCGs acknowledged their services were not completely accessible because of not being delivered in BSL.

These included Salford CCG, which said, “this would depend on the definition used for ‘fully accessible’” and Wirral CCG admitted interpreters “posed challenges in the delivery of services and for individuals receiving treatment”.

Ashford, Canterbury and Coastal, South Kent Coast and Thanet CCGs all stated the mental health providers they commission are not fully accessible to BSL users, but “interpreters are available”.

NHS England chose not to outline what the standard for accessibility should be, particularly for native deaf people, whose first language is BSL.

A spokesman said: “Deaf people should be able to access talking therapies for anxiety and depression just like anyone else, either via their GP or self-referral.

“All patients’ needs and circumstances are different and local health services who make these decisions take this into account – some employ BSL-trained therapists directly or use trained interpreters, while others might decide it’s more appropriate to refer on to a dedicated provider of sign language therapy.”

NHS England logo. Picture: PA Wire/ Dominic Lipinski

What other solutions could help?

NHS England also highlighted digital platforms such as text messaging as an alternative to face-to-face counselling.

Although online services are available, one professional explained lots of people do not know about them. 

GPs must also be signed up to the relevant contracts to use online interpreting services. 

Newsquest was told about a clinician who refused to use an online interpreter because they felt it was not needed.

Paul Redfern, general secretary of the British Society for Mental Health and Deafness, said: “There are two aspects to access – attitudes and practical provision – and both need working on.”

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.

“The key issue is choice,” Mr Redfern continued.

“A report from Bangor University by Christopher Shank stated some deaf people prefer counselling with an interpreter because having a hearing counsellor guaranteed anonymity. 

“Others prefer the direct and live connection which can dispense, without the need for constantly working out the cross-cultural connotations. 

“For me, it’s a question of what’s best for the individual. It shouldn’t be a question of cost.”

The expense of hiring an interpreter or commissioning more specialist services can be a factor in CCGs’ decision making.

An Essex interpreter, who asked not to be named, explained he would be relied upon as an expert if the therapist did not understand deaf culture.

This is part of the reason he reduced the time spent interpreting for therapy appointments.

He said: “In these group sessions with deaf parents and their hearing children, there was a lot of self-reflection and analysis. Lots of deaf people need more time to process such information and they work with concrete ideas rather than abstract ones, which need more unpacking.

“As the interpreter in those situations, we’d be relied on to help explain those concepts, which then blurs the lines of our role. I found I became a co-counsellor, which I’m not qualified to do.”

He later added: “Our presence will give the deaf person some outlet for support, but it’s certainly not ideal.”

During his five years in the industry, he has also interpreted in medical settings.

“I’ve gone to doctor’s appointments with deaf patients who are feeling suicidal and they’ve been given a card and asked to ring the number on it. When it’s brought to the GP’s attention that they  can’t use the telephone, they’ve been asked if there’s someone else who can make the call for them. 

“GPs tend to think, ‘Well, that’s the service we’re using and that’s that’. For 99 per cent of the population, that will work, but there’s no thinking outside the box. 

“This is one reason why there’s been a spate of mental health-related suicides within the deaf community over the past year because they haven’t got that vital access.”

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 funding request (IFR).

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

WHAT ARE IFR REQUESTS? 

Any patient can make an individual funding request if a doctor believes their clinical circumstances are ‘exceptional’ and they 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.

Just sixty-one CCGs made it possible to total the number of funding applications made by deaf patients and BSL users for specialist mental health services. 

The total applications have risen in nearly each year between 2015/16 and 2018/19.

Ninety-two CCGs had no IFR data to share for different reasons.

However, this does not reflect the true number of people trying to access support via their GP or capture self-referrals. 

Some people ask for their deafness not to be recorded and not all CCGs record the entire IFR process correctly, Newsquest was told.

Figures provided to Newsquest’s data team also revealed 168 CCGs said “Yes” to funding talking therapies for deaf patients, 19 said “No” and four CCGs did not reply with either a yes or no answer.

From a counsellor's viewpoint  

Deaf counsellor Adrian Francis has had to turn clients away in Dorset because funding for their treatment was denied by the CCG in favour of approved IAPT (Improving Access to Psychological Therapies) providers.

He said: “Getting the funding from CCGs is what’s problematic and time consuming.

“When a deaf patient is told there’s no money for them to get help, they give up. Those are the ones who slip through the net and there’s no way of capturing the data for those people, which is why the figures CCGs have provided are lower than what they are in truth.”

There being “no evidence of clinical exceptionality” was a reason given by several CCGs for deaf people’s mental health-related IFRs being refused.

Patients being recommended to try commissioned services first was another reason.

Mr Francis added: “It’s a postcode lottery. Often, I get people contact me, but I have to turn them down because they’re too far away or I know their area’s CCG had previously declined funding for specialist BSL counselling.

“There must be greater deaf awareness and for policymakers to meet with deaf organisations so they can educate them about the difficulties faced by deaf people. 

“The answer is also funding. Who’s going to pay to educate deaf signing therapists? CCGs need to fully explore all the options.”

Max's story 

Max Barber, 24, who was experiencing anxiety and low mood, waited a year before receiving talking therapies in May 2019, largely due to issues with the funding process.

He originally declined being seen by a hearing-led service in London because of it not being suitable.

Max Barber, a digital editorial assistant and BSL tutor

“I then contacted a charity which told me this was the norm – CCGs would deny funds for those who haven’t attempted local services with interpreters first – so I ended up accepting this route since I didn’t have the energy to fight against the system,” he explained

“My depression and anxiety got worse as a result.  It felt like my experience as a deaf person was being minimised and everything was being decided by hearing people with no regard for my feelings.”

During the wait, Max began to share his experiences on Twitter as a form of self-help and spoke to his deaf housemates. This helped a lot but also made him feel like a “burden”.

He said: “When I did get an appointment with a hearing counsellor, there was no BSL interpreter because there was an error with the booking system, which is very common.

“I went ahead with the session using pen and paper, but I couldn’t fully explain how I felt. I also felt awkward – there was no eye contact with the counsellor. 

“They agreed this wasn’t suitable and referred me back to my GP with the recommendation I receive counselling in BSL. I waited for about a month or two and heard nothing.”

Max’s fear, like other individuals revealed to Newsquest, is more deaf people will attempt to harm or kill themselves while waiting for specialist support.

Last year, Daniel MJ Webster, a charity worker with Action on Hearing Loss, took his own life. It was reported he requested deaf-focused therapy in BSL but the funding bid was refused.

Daniel was married with a young family. 

Max, who receives support from a hearing counsellor involved in the deaf community, added: “This is probably going to be the norm if this issue continues.”

In Daniel’s memory, Deaf4Deaf, in partnership with the Royal Association for Deaf People, will launch a national wellbeing line called TalkMore.

Some areas are getting it right

Across England, there are CCGs demonstrating positive practice with regards to engaging with deaf patients.

Services provided by South West London and St George’s Mental Health Trust include a deaf adult inpatient ward and community team. 

Coastal West Sussex has a BSL-trained therapist in its IAPT team.

Leeds CCG said it has an arrangement to fund all requests for IAPT and cognitive behavioural therapy (CBT) for deaf patients in Leeds.

Sheffield CCG told Newsquest that its main provider of commissioned services, Sheffield Health and Social Care NHS Trust (SHSC), sought advice from the South Yorkshire Service for Deaf People with Mental Health Needs.

A CCG spokesman said: “We’re also aware Sheffield IAPT, a part of SHSC, recently reviewed its IAPT offer in relation to deaf people and are currently forming a working group to look at pathways for this patient population, and to develop champions within their workforce. 

“It’s also developing materials for their staff and guided self-help leaflets suitable for deaf people, and developing a specialist psychological wellbeing practitioner forum.”

In England, all providers of NHS or publicly-funded adult social care services must meet the legal requirements of NHS England’s Accessible Information Standard.

It was introduced to ensure people who have a disability or sensory loss receive information they can access and understand, and professional communication support if they need it.

In response to Newsquest’s findings, a Department of Health and Social Care spokesman, said: “It’s completely unacceptable for deaf patients not to receive the support they need to access NHS care.

“We changed the law so health and care providers are legally required to provide people with a disability or sensory loss with information that they can access and understand, and we expect all trusts to make arrangements to accommodate their needs.”