Support after Diagnosis

Diagnosis of retinitis pigmentosa or a related condition, and dealing with all the immediate questions and anxieties that will arise, can and will be stressful.

There are many sources of help available, from formal professional counselling, which can be very structured and valuable in helping you come to terms with the prospect of sight loss, through to friendly helplines, to social groups and online networks.

It is likely that you will need support at various times as you live life with RP, not just after your initial diagnosis.

Support from Healthcare Professionals

Many of the eye clinics and hospitals are supported by ECLOs (Eye Clinic Liaison Officers) who will signpost you to sources of support including trained counsellors.

Some hospitals, including Moorfields Eye Hospital in London, have counsellors available who specialise in sight loss, however many NHS Trusts do not provide this.

Your GP will be a good source of advice as to what professional services are available in your area.

Even if the service is available to you, you might feel uncomfortable with the idea of talking to a counsellor, and this is quite usual. However you are strongly encouraged to take advantage of their professionalism, knowledge, expertise, reassurance and (often) friendship. A counsellor will help you plan for tomorrow and cope with today and will answer many of the ‘real life’ questions the eye consultant can’t tackle.

Other Support

Counselling services are also available on a private basis or through charities such as Action for Blind People.

The British Association for Counselling and Psychotherapy (BACP) website It’s Good To Talk is also an excellent resource.

As well as counselling, a wide range of other support services are available from a variety of organisations.

Your local Social Services Department can provide guidance on many practical issues as well as access to their own support services. A separate page on Social Services Support on this pathway explains more.

Charities can help too, specialist RP charities exist as well as those dealing with broader issues around visual impairment and blindness. These links will be helpful:

  • RP Fighting Blindness provides a range of information and support services for people with RP, as well as running events and social groups across the UK
  • This includes the RP Helpline, which is staffed by volunteers who understand RP and how it can impact on you and your family. This invaluable free service is available via phone and email
  • RNIB (Royal National Institute of Blind People) have great information on their site about living with sight loss or the prospect of sight loss and also run a helpline.
  • In each county and in many major towns there are local societies and associations for visually impaired and blind people. You can find the nearest one to you by looking at the website of Visionary, their umbrella group.

Don’t be put off by the words ‘blind’ and ‘blindness’ in the names of these organisations; all of them understand that sight loss starts slowly in retinitis pigmentosa and will warmly welcome you to their groups and discussions.

Informal groups exist online, and it can be beneficial to make links with people who are in a similar situation and facing similar questions to yours. At least one strong UK-based group exists on Facebook and there are links there to other groups too. However, do remember that public internet forums are not policed at all, so take measures to ensure you are both safe online and not exposed to misinformation, particularly about the availability of treatments.

As you can read later in this pathway, specialist support is also available when you start to think about things like employment and career planning, education, mobility, and family planning. Never be afraid to ask, there is no such thing as a ‘stupid question’ and the RP Helpline team will always signpost you to people who can help, even if they do not have the answers to your questions themselves.

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