For many people with RP, or indeed many other conditions, navigating your way through the UK National Health Service can be quite daunting. From the General Practitioner (GP) to your consultant, counsellors, geneticists, and a whole host of support staff and technicians, it can be difficult to know what you are entitled to expect at each stage.
The really important thing to remember is that the NHS is there to support you at a time of need. Asking well informed questions and being firm about your entitlement to support and information is the key to this.
We have to accept, whether it is right or not, that different standards of service and care, different levels of competence amongst health professionals, and varying access to services, is a part of the NHS as it stands and this is not likely to change in the short term, especially in respect of a relatively rare, non-life threatening, currently untreatable condition. However, by making yourself aware of what you are entitled to ask for, and being well informed about your options, you will be in a stronger position to get answers to your questions and to push for access to services, including not being discharged without follow up, genetic testing, referral to other professionals, registration as visually impaired or severely sight impaired, and lots more.
Your journey through our healthcare system will normally start with your GP or an optician.