Support for people with Usher syndrome

There is a range of support available to help you manage your Usher syndrome diagnosis, and take positive steps towards an independent and fulfilling future.

Living with Usher syndrome can be challenging, and you will experience good days and bad days.

The challenges might seem overwhelming at times, and leave you feeling that you cannot cope with what is happening to you. If that is the case, then counselling may be an option for you.

There are a number of services that offer counselling, therapy and further support and guidance.

Talk to your GP

Often the first person to speak to is your GP. In many cases, they will be responsible for making referrals to specialists, such as counsellors, psychologists and psychiatrists. 

It’s important that you can communicate easily with your GP. There are requirements under the Equalities Act 2010 and the Accessible Information Standard that make it the responsibility of the GP to provide the communication support you need.

The GP may refer you to a counsellor, who will talk to you in complete confidence. Counselling is not always suitable, in which case your GP may refer you to a clinical psychologist or psychiatrist.

Unfortunately, there is often a waiting list for NHS services, but it depends on what is available in your area and how urgently the service is needed.

Below are details of organisations and services that have experience in supporting people with Usher.

Signhealth offer a wide variety of services, such as counselling, advocacy and supported living. This includes BSL Healthy Minds, a therapy service delivered in British Sign Language. They also run DeafHope, a London only project that supports deaf women and children suffering from domestic violence.

RNIB has a Sight Loss Counselling Team of professional telephone and online counsellors who offer confidential support.

The British Association for Counselling and Psychotherapy (BACP) website, Good To Talk, explains more about counselling and provides a list of therapists who use British Sign Language (you will need to check whether they meet your communication needs).

The Counselling Directory lists counsellors and psychotherapists who are members of a recognised professional body.

RP Fighting Blindness provides information and support for people affected by retinitis pigmentosa (RP), the eye condition that affects people with Usher. They also offer a RP helpline, which is open Monday to Friday. Call 0845 123 2354.

The British Association of Art Therapists (BAAT) offers art therapy sessions, which can be a great way to express yourself, your feelings and emotions.

Sharing your experiences with others

People with Usher, and their families and friends, often find it helpful to share stories, successes and achievements, ideas, experiences and strategies for coping, especially when newly diagnosed or at times of change.

Here are some ideas for how you can connect with people.

Facebook

Facebook can be a good way to share your interests and opinions, news of events and meetings, and to give ideas and tips. There are many Facebook groups and pages for people with Usher or their families, including our Usher service group.

Other groups that you may find useful:

Groups that focus on retinitis pigmentosa (RP) or sight loss, but often include Usher:

Twitter

Follow the Usher Twitter account @SenseUsher and the main Sense Twitter account @Sensecharity.

Skype and FaceTime

Skype and FaceTime are a great way to open up a world of contacts. If you would like to Skype the Sense Usher Service please contact us for an appointment (Monday to Thursday, 10am-3pm) letting us know whether you use sign language.

Blogs

More and more people with Usher are using blogs to express their thoughts, feelings, interests and experiences.

Writing everything down can be helpful, as well as being a great support to other people with Usher. We have a Sense blog, which includes articles from people with Usher.

Other blogs worth reading include:

Sense branches and other groups for people with Usher

Sense branches welcome everyone with complex communication needs, including people with Usher.  

Hearing and Sight Impaired UK brings people together to combat isolation and provide mutual support. It holds regular meetings and social events, and campaigns on local and national issues. 

Get involved with Sense

You can get involved with Sense by joining our events, campaigning, holidays or fundraising, all of which are great opportunities to meet new people.

Publications

The University of Birmingham and Sense Usher research project

Some of the following articles may be helpful, as they describe other people’s experiences of sight and hearing loss, and Usher.

Talking Sense: Out of sight, out of mind? Mental health difficulties faced by deafblind people  

Talking Sense: my life as a tightrope walker. Life for a deafblind person at a physical, mental and psychological level

Talking Sense: The Healing Touch

Get in touch

Get in touch for information and advice about Usher syndrome

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