How would you react if you were told that your therapist only spoke Russian, but you would be given an interpreter to help you?
Unbelievably, Deaf* sign language users face this dilemma every day. They communicate in sign language, but they are sent to a therapist who cannot sign and only speaks English.
What is really causing resentment is that, until earlier this year, under the IAPT self-referral system they could have seen a qualified Deaf therapist who was able to work in sign language. That’s no longer the case. The clock has been turned back and Deaf people are again being treated as second-class citizens.
It’s a huge turnaround from three years ago, when the Department of Health finally recognised that Deaf sign language users responded to therapy more positively when the therapist was also a fluent sign language user. They invested in building a national service, which we (the Deaf health charity SignHealth) led.
John Moores University in Liverpool set up an IAPT training course with lecturers who were all fluent signers and the first cohort of Deaf counselling students embarked on their training. The average reading age of a sign language user is around eight years old, so all IAPT materials were translated into sign language. Manchester University validated the sign language versions of the assessment tools (GAD7, PHQ9 and W-SAS) so the Deaf counsellors could record therapy outcomes.
With this availability of psychological therapies in sign language through IAPT, Deaf people were able to self-refer; GPs were no longer the gatekeepers – or barriers – to treatment. Deaf people responded well to treatment in their own language. The national outcome measure of full recovery after treatment is 44 per cent; we were recording improvements of 75 per cent. Clients told us how it helped: ‘Feel confident good talk and let my problem out. Feel like breakthrough’; ‘Getting there – made me stronger. I don’t know how I cope without this’; ‘I had lot learn bad and good experience and now positive for my future’.
Although there is no evidence that Deaf people have higher levels of mental illness such as schizophrenia, they are twice as likely as the general population to experience common mental health problems such as depression and anxiety. The causes can be bereavement, loss of job, family problems, relationships, domestic violence or identity issues, to name just a few. All of them bring isolation because of cultural and linguistic difficulties.
The first cohort of Deaf therapists was such a success that funding was provided for a second group of students. By now over £1.5 million had been invested in developing the service.
Then along came the restructuring of the NHS. Clinical Commissioning Groups (CCGs) that had inherited contracts for the Deaf IAPT service let them lapse. The Deaf population in each CCG area is small, and many commissioners would rather use a hearing therapist with an interpreter than contract with a qualified Deaf therapist, even though it ends up costing them more and the outcome is not as good. For us, trying to engage with every individual CCG to persuade them otherwise was an impossible task.
Clearly, with the disappearance of the Primary Care Trusts and Strategic Health Authorities, much commissioning knowledge was lost. The Department of Health invited us to apply for national specialised commissioning from NHS England, which would have provided a special pot of money for a nationwide Deaf IAPT service, but sadly we didn’t qualify. Our predicted rate of 1,200 referrals a year was too high, we were told, and the cost of each treatment was too low.
Is this discrimination? That depends on your view of what constitutes a ‘reasonable adjustment’ under the Equalities legislation. Is this unfair and unjust? What do you think?
So, where do we go from here? With our numbers too small and our needs too specialised for local commissioners and too big and too cheap for national commissioners, we are left with nobody to commission the service.
Tragically, we have no choice but to make our specially trained Deaf therapists redundant. They have done an excellent job, but the commissioning system has failed them and the Deaf people they supported.”
* Many deaf people whose first or preferred language is BSL consider themselves part of the Deaf community. They describe themselves as Deaf with a capital D to emphasise their Deaf identity.