Lysosomal Disorders Unit

The National Health Service is free at the point of use to all UK residents. However the funding systems vary between the countries. Where you live may have an impact on where you can be referred and whether you can receive treatment for your Lysosomal disorder.


England

The NHS in England is usually funded through a system of local PCTs (primary care trusts) commissioning or purchasing a wide range of general services from their local hospitals. Regional specialist commissioners can purchase more specialised services on behalf of larger communities - this might include operations such as kidney transplants. However for very rare disorders or specialised services (such as those for lysosomal disorders), the commissioning process is different. 

Specialist comissioning 

If you would like to be reviewed at CUH and you live in England you simply need your GP or local hospital doctor to refer you to us.

 

Wales

A lysosomal disorders service for Wales has recently been established in Cardiff. It had previously been possible for Welsh patients to be seen at CUH.

Referral to CUH for Welsh patients requires the prior approval of Health Commission Wales. Funding for treatment for Lysosomal storage disorders also requires approval by Health Commission Wales and the negotiation for this can be done by the doctor at your specialist centre.

The NHS in Wales is funded through the local health boards.

Health of Wales

 

Scotland

Scotland has an agreement  to enable patients to be seen at the English National Centres in addition to local follow-up.

NHS Scotland - designated services

Scottish patients require referral by their local GP or doctor. For treatment, permission must be granted from the local health board. This must be obtained by your treatment prescriber.

 

Northern Ireland

Northern Ireland has an agreement to allow patients to be seen at the English National Centres in addition to local follow-up. Funding requests are currently made to the Consultant in Medical genetics at the NI Regional Genetics Centre by either the specialist centre or the local physician. 

 Health & Social Care in Northern Ireland

 

Channel Islands and the Isle of Man

It is possible to see patients from the Channel Islands and the Isle of Man - please contact us if you require further details.

 

Overseas patients

CUH complies with national (and European Union) legislation about who is eligible for free NHS treatment. We have a Paying Patients Office, which is the first point of call for all enquiries about eligibility, insurance and private treatment 01223 216 565  or 216 999.

In general if you are from an EU country your doctors referral letter should be accompanied by an E112 form for planned treatment or an E111 for emergency care. You can bring this form with you to the appointment or send it in advance.

Patients from outside the EU will be required to pay for their visit privately and they should contact the paying patients department before their planned visit.