EARLY ACCESS SCHEME SITES

29 November 2018

Families 4 Access has been working collaboratively with the NHS to support parents and carers, to the best of our ability, to obtain access to Epidiolex. It is important to note that this is the only CBMP available, apart from Sativex, in the UK.

The NHS have spoken to GW and they sent the following reply:

GW has immense sympathy with all patients and their families trying to deal with long-term treatment resistant epilepsy and the huge impact it has on so many lives. However, as a pharmaceutical company we cannot comment on, or suggest treatment or physician possibilities that might be seen to influence a patient’s treatment pathway. Each patient must use their treating physician as their key point of contact.

The list of UK Early Access Programme sites that has already been distributed within the NHS:

England

  • Great Ormond Street Hospital, London

  • Alder Hey Children’s Hospital, Liverpool

  • Birmingham Children’s Hospital

  • Addenbrookes Hospital, Cambridge

  • Manchester Children’s Hospital

  • The Great North Children’s Hospital, Newcastle

  • John Radcliffe Children’s Hospital, Oxford

  • Royal Preston Hospital

  • Royal London

  • Leicester Royal Infirmary

  • Queens Medical Centre, Nottingham

  • Evelina Children’s Hospital, London

  • Sheffield ‘ Hospital

  • St Georges Hospital, London

  • Leeds General Infirmary

  • Bristol Children’s Hospital

  • Southampton General Hospital

  • Chelsea and Westminster Hospital, London

  • St Mary’s Hospital, London

Wales

  • University Hospital of Wales, Cardiff

  • Morriston Hospital, Swansea

Northern Ireland

  • Royal Belfast Hospital for Sick Children

Scotland

  • Ninewells Hospital Dundee

  • Yorkhill Children’s Hospital, Glasgow

  • Edinburgh Children’s Hospital

Some jurisdictions are not part of the Early Access Programme there are a number of centres in London and so if you did decide to ask for a second opinion you could potentially ask to be referred to one of those centres for that second opinion (although the normal process is to get a second opinion from your current hospital trust). More information on getting a second opinion can be found here.

Families 4 Access continues to welcome feedback from parents on their findings of this process.

Families 4 Access Team

BASIA ZIENIEWICZ