Counselling and therapy for people with Usher and their families
A deafblind person may respond in many ways to the challenges that arise from their Usher. There may be feelings of shock or denial at diagnosis, which may be followed by distress, frustration, passivity or anger. There may be grief at the loss of the future they had imagined for themselves, as well as the actual loss of their hearing/vision. These responses may be repeated when there are changes with their condition or events in their life. These responses are all entirely normal and can affect the person with Usher and also their family members.
There are a number of services that are available to offer support and guidance. Whilst Sense does not offer its own counselling or therapy service, we hope the following information will give you some guidance as to the range of services available.
Talk to your GP
Often the first person to discuss this with is your GP. In many cases they will be responsible for making referrals to specialists, such as counsellors, psychologists and psychiatrists. It is important that you and your GP can communicate easily during these discussions. There are requirements under the Equalities Act 2010 and the Accessible Information Standard 2016 that make it the responsibility of the GP to provide the communication support you need.
The GP may refer you to a counsellor, who you can talk to in complete confidence about the way you feel. Sometimes counselling is not the most suitable service, in which case the GP may refer you to a clinical psychologist or psychiatrist. They will go through more in depth assessments with you, to try and identify the best way to help you.
Unfortunately there can be a waiting list for NHS services – it will depend on what is available in your area and how urgently the service is needed. You can discuss this with your GP.
Below are details of organisations and services that have experience in supporting deaf people. In some cases you can ask your GP for a referral, for others you may need to fund the service yourself. This will vary dependent on the agreements in place with your local GP practice.
Signhealth offer a wide variety of services such as counselling, advocacy and supported living including:
BSL Healthy Minds - This is a therapy service delivered in British Sign Language. It supports Deaf people who are struggling to live with anxiety, depression and similar problems.
DeafHope – London only
DeafHope supports Deaf women and children who are suffering domestic violence. The service is run by Deaf women and gives help and advice on how to be safe, and where to find refuge. Currently the service is only available in London. The service also runs Young DeafHope, working with young people, teaching them about the rights and responsibilities which are part of good relationships.
If you experience difficulties in obtaining a referral to Signhealth, please let us know. There are some areas where patients can refer themselves to the service under the IAPT programme (Improving Access to Psychological Therapies). The Signhealth website provides a link for you to check whether or not your practice is covered by an agreement.
Action for Blind People
British Association for Counselling and Psychotherapy (BACP)
The BACP website ‘Good to Talk’ explains more about counselling.
The Good to Talk website includes the following link to a list of therapists who say they use British Sign Language (but you will need to check whether their level is appropriate for you communication needs).
The Counselling Directory
This only lists counsellors and psychotherapists who are members of a recognised professional body or those who have sent them copies of their qualifications and insurance cover.
Several Conselling Directory helpful links:
The following resources may be helpful in learning about the experiences of other people with Usher.
The University of Birmingham / Sense Research project
Life and Change with Usher: The experiences of diagnosis for people with Usher syndrome (2013)
Although not specifically about counselling some of the following articles may be helpful to read to learn of other people’s experiences of deafblindness.
RP Fighting Blindness
RP Fighting Blindness provides information and support for people affected by RP (retinitis pigmentosa – the eye condition affecting people with Usher).
They operate The RP Helpline for people with RP, their relatives and anyone who needs to know more about RP and how to cope with the difficulties it presents.
Tel: 0845 123 2354
9.30am - 9.30pm Monday to Friday
Manned by volunteers who either have, or have family members with retinitis pigmentosa. An answering service is in place at other times and messages will be returned as soon as possible.
Please remember that this service cannot provide diagnoses or counselling, and any information given is intended only as a guide. However, they do say they can offer confidential support for people with RP, and their families, and a chance to discuss your feelings or concerns anonymously.
Another form of therapy that people have found helpful, especially where language may limit expression of feelings and emotion, is art therapy.
For more information on how art therapy can help both adults and children please see:
First published: Wednesday 23 November 2016
Updated: Monday 16 January 2017