Since April 2010, NF2 care in England has been nationally commissioned.
National commissioning is the way that services for rare diseases or specific treatments, that are expensive but only done occasionally, are funded. The services cover conditions or treatments with less than a 1000 people involved. The budget for the service comes directly to the designated centres from the National Commissioning team and so ensures uniform access to everyone across England, whilst avoiding the delays that occur when individual local commissioning bodies have to agree individual treatments (for example for ABI’s and the Hearing Link courses).
Professor Gareth Evans’ studies have shown that treatment for NF2 in a specialist centre is associated with reduced mortality. This is due to a combination of factors, expertise in vestibular schwannoma surgery but perhaps more importantly following a conservative approach to management – many of the tumours in NF2 will never need treatment and so unnecessary operations are avoided. Also vestibular schwannomas (VS) in NF2 need special consideration – they are not the same as when they occur as a ‘one-off’ in the general population.
At any one time in England there are around 860 people with NF2, and about 38 people receive the diagnosis for the first time each year. In any one year the overall number of treatments in England for NF2 is small – around 70 NF2 related Vestibular Schwannomas are removed, only 15 brain stem implants fitted and 15 NF2 Vestibula Schwannomas treated with radiosurgery.
The Neuro Foundation funded a consensus meeting about NF2 care in 2001. The Specialist Advisors highlighted the problems for patients with disjointed care and different centres giving different advice. Despite the consensus guidelines being published in 2003 there was no consistent improvement in care. This led Professor Evans to work with the four English centres with the largest NF2 clinics to seek national commissioning for English NF2 care. The service was funded from April 2010.
Patients in Scotland are also funded through this service and the centres see patients from all over the UK, but Irish and Welsh patients need to have their Doctors support for funding.
The NF2 Service Structure
The NF2 service is coordinated through the NF2 clinics in Manchester, Cambridge, Guys and St Thomas' in London, and Oxford – contact details below.
The four centres each coordinate NF2 care in a defined geographical area covering specific neurosurgery units. The backbone of the service is a team of NF2 nurse specialists, who will coordinate patient care and act as the link between the centres and the local services. Some of the Nurses will be based in the other centres with existing NF2 clinics.
The NF2 surgeries funded through the service are vestibular schwannoma removal, brain stem and cochlear implants. The other key service is for radiation based treatments for NF2. The coordination of this is lead by Mr Rowe in Sheffield and the majority of NF2 radiation treatments are done in Sheffield.
As new drug treatments become available they are also funded through the NF2 service. At present the only drug shown to be effective for schwannoma growth control is Avastin and this is funded for use in people with schwannomas (usually vestibular) that are growing at faster than 4 mm in diameter a year.
There is also specific funding to help make living with NF2 easier. Each designated centre is supported by experts in facial nerve reconstruction, audiologists and hearing therapists, physiotherapists and psychologists – all professionals who understand NF2. The clinics will have systems to help people with limited or no hearing, using light writers and voice recognition software in addition to lip speakers and signers.
There is funding for patients to attend the NF2 courses run by the charity Hearing Link.
NF2 Centres - lead clinicians and contact details
Manchester (covering Liverpool, Newcastle, Leeds and Sheffield)
Prof Gareth Evans (national lead) / Dr Sue Huson
St Mary’s Hospital,
Tel: 0161 276 5152
Fax: 0161 276 6145
Guys and St Thomas’ NHS Foundation Trust (covering the four London genetic centres)
Prof Rosalie Ferner
Department of Neurology
Great Maze Pond
London SE1 9RT
Tel: Sheila Nicholas 020-7188-3970 or Henry Neville 020-7188-3959
Cambridge / East Anglia and the Midlands (covering Birmingham, Leicester, Nottingham)
Mr Patrick Axon
Dept of ENT
Oxford / South West including Southampton (covering Bristol, Exeter and Southampton)
Dr Dorothy Halliday/Dr Allyson Parry
Consultant Geneticist/Consultant Neurologist
Oxford NF2 Service
Level 3, West Wing
John Radcliffe Hospital
Oxford, OX3 9DU
NF2 Office Tel: - 01865 231889