Support for Medics

Many GP’s, paediatricians, geneticists and nurses may never have come across a case of NF1 or NF2 during their professional life. When they do, there is often a need to supply some basic information to the patient as well as to obtain the latest information about the condition.

Over the years The Neuro Foundation has amassed a great deal of information about both NF1 & NF2 and we work with medical professionals throughout the UK and abroad to ensure that the latest information can be made available to NF patients and their families.

Many medics, research professionals and health organizations look to us to continually update our archive of information, medial research and current treatment regimes for them to access when required.

If you are a medical professional and require Clinical Guidelines for NF1 or more information about the NCG Service for NF2, please email us at .(JavaScript must be enabled to view this email address)

If you would like more information about neurofibromatosis, our forthcoming events, or how we can help you further, please contact us on 020 8439 1234.

We recommend that you visit the Knowledge Hub for our full range of detailed information sheets on NF1, NF2 and Schwannomatosis, including clinical guidelines.

The Neuro Foundation complements the services already provided by the NHS and tries to ensure that all patients have access to health care appropriate to their needs.

Current NHS Service for people with NF

All children with a diagnosis of NF have health checks with a paediatrician throughout childhood. Once children reach adulthood, care is transferred to either their GP, Specialist NF Clinic or other hospital based doctor depending on their circumstances and health status.

National “Complex NF1” Service.

This is a nationally funded specialist service that aims to look after the health care needs of NF1 patients in England with rare complications that cause major health problems. There are two national centres and a multi-disciplinary team of senior doctors and nurses who co-ordinate diagnosis and long-term care of patients with complex NF1. Referral from your GP or local hospital doctor is needed to access this service; both centres also accept non-complex NF1 referrals. National funding arrangements are in place for these patients. Both centres will accept referrals from all over the UK, but patients who are not from England must have funding arrangements agreed beforehand.

LONDON

Professor Rosalie Ferner (national lead)

Guy's & St. Thomas's NHS Foundation Trust

Neurology Department

Southwark Wing

Great Maze Pond

London SE1 9RT

Tel:  Co-ordinator- Henry Neville 020-7188-3959

Fax: 020-7188-3959

MANCHESTER

Dr Sue Huson

Department of Genetic Medicine

6th Floor,

St Mary's Hospital

Oxford Road

Manchester M13 9WL

Kirsty.harper@cmft.nhs.uk

Tel:  0161 276 5152

Fax: 0161 276 6145

The National NF2 Service

In 2010 a nationally funded service was established for patients in England with a diagnosis of NF2  The purpose of the service is to ensure patients are managed consistently and conservatively by experienced doctors within a multi-disciplinary setting and that they receive the highest standard of care. Patients from Scotland are also funded; patients from Ireland and Wales need to have agreed funding with support from their doctors.

The service is co-ordinated from four major clinic centres: Manchester, Cambridge, Oxford and London. Each centre has a clearly defined geographical area of responsibility and runs peripheral clinics within that area, contributing their expertise to ensure the same standard of service and care is maintained. There is a multi-disciplinary team of doctors and nurses supporting all the clinics. There is a single centre at Sheffield that undertakes radiation treatment where appropriate.

Contact details for the four centres are as follows:

MANCHESTER (covering Liverpool, Newcastle, Leeds and Sheffield)

Prof Gareth Evans (national lead)/Dr Sue Huson

Genetic Medicine,

6th Floor,

St Mary's Hospital,

CMFT,

Oxford Rd,

Manchester

M13 9WL

Kirsty.harper@cmft.nhs.uk

Tel:  0161 276 5152

Fax: 0161 276 6145

GUYS AND ST THOMAS' NHS Foundation Trust  (covering London and southeast England) Professor Rosalie Ferner

Department of Neurology

Guy's Hospital

Great Maze Pond

London SE1 9RT

Tel:  Henry Neville 020-7188-3959

Fax: 020-7188-3959

CAMBRIDGE (covering Birmingham, Leicester, Nottingham)

Mr Patrick Axon

Dept. of ENT

Addenbrookes Hospital

Hills Road

Cambridge

CB2 2QQ

Tel: 012230217471

Fax: 01223217559

OXFORD (covering Bristol, Exeter and Southampton)

Dr Dorothy Halliday/Dr Allyson Parry

Consultant Geneticist/Consultant Neurologist

Oxford NF2 Service

Neurosciences

Level 3, West Wing

John Radcliffe Hospital

Headley Way

Headington

Oxford, OX3 9DU

Linda Porter Goff on 01865 231889