In 2013, the NHS released a new constitution and patient choice framework outlining the rights patients have in the NHS and the choices they are entitled to make. Several things within this may be important within the EDS community which are outlined below.
Please note: these guidelines are correct within NHS England.
Scotland, Wales and Northern Ireland have different guidelines. We will try to post similar guidelines for the rest of the UK as soon as possible.
1) Waiting times.
The NHS constitution states that the maximum waiting time for a (non-emergency) initial appointment is 18 weeks (4 1/2 months) from the time of referral. If the waiting time exceeds this you have the right to ask to be referred to another hospital or consultant with a shorter waiting list.
2) Choice of consultant/practitioner.
When you are referred for an initial appointment you have the right to choose who you are referred to, so long as the practitioner provides the treatment you need and they work in NHS England. You also have the choice as to who performs diagnostic tests. There are some exceptions to this, you can find these detailed in the NHS choice framework PDF.
3) Choice of hospital.
When you are referred for an initial outpatient appointment you have the right to choose which hospital you are referred to. This can be any NHS hospital in England that provides the correct treatment. You can also have treatment in the EU and Switzerland funded by the NHS. Details of this can be found in the NHS choice framework PDF.
4) Community Services.
If you are being seen in the community you have the right to choose who is providing these treatments. This applies to community services such as physiotherapy and psychiatric treatments.
5) Choice of treatment.
You have the right to choose what treatment you have, so long as it is clinically indicated. For example, you might choose to be seen by an osteopath rather than a physiotherapist, or to have hydrotherapy instead of physiotherapy.
If you are denied choice of services, please contact your local clinical commissioning group. Details of this can be found at http://www.nhs.uk/Service-Search/Clinical-Commissioning-Group/LocationSearch/1
The NHS Constitution and NHS Choice Framework can be downloaded at http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx
"Choice at Referral for Elective Care" policy which drives these results is an England only policy.
We are also aware that those currently searching for facilities outside of England are presented with England only results. The NHS are in the process of changing this so that users are informed of the information sources for their respective countries. In the meantime please find these details below:
Scotland - http://www.show.scot.nhs.uk/
Wales - http://www.wales.nhs.uk/
Northern Ireland - http://www.hscni.net/