Epilepsy is the most common, serious neurological condition. About 1 in 103 people have one of the epilepsies. It must be remembered that epilepsy is an umbrella term for at least forty-five discreet conditions, and understanding the classification of each individual’s type of epilepsy is vital in providing the best treatment options. According to figures obtained from the area’s two Clinical Commissioning Groups (CCG’s), there are just over 2000 people with treated epilepsy in mid and south Staffordshire. The Department of Neurology’s epilepsy database contains just under 3000 people with the condition, although some of these may have moved to live outside the area, had their epilepsy go into remission or have non-epileptic attack disorder. The nurse currently has about 700 patients under active review.
A Community Support Service for the Epilepsies In the latter part of 2011, clinicians from the Department of Neurology at Stafford hospital had a vision for the future of epilepsy services in the area. Crucially, they felt that it was time to move as much of the service as possible from a hospital to a community base. Stafford and Surrounds and Cannock Chase Clinical Commissioning Group’s, were very interested in the idea and produced a detailed plan, known as a service specification, for the way that they wanted epilepsy care to be delivered. The only parts of the service that would remain at the hospital were consultant led diagnostic clinics and investigations. The follow-up service was to be managed by a senior epilepsy nurse, who would hold clinics at various locations across the area. Medical support for the nurse would be provided by consultant neurologists from the Department of Neurology at Stafford Hospital. The Practical arrangements for the service were made through the first half of 2012. The first clinics opened in July 2012 with all clinics becoming operational by September 2012. Service Users were involved in consultation when setting up these Clinics via Staffordshire Neurological Alliance to look at our plans and very constructive feedback was given. Subsequently, a patient satisfaction survey was undertaken and very positive feedback was received. Continuity, accessibility and approachability are the themes that have run through the service plan. The cornerstone of this idea has been to ensure that each patient sees the same nurse on each visit. At present, there is only one nurse in post, but the plan has aspirations for the expansion of the nurse led service. Under these circumstances, a named nurse system, similar to the one recently announced as a national policy initiative for inpatient services in the wake of the Francis enquiry, would be set up.
Benefits to Patients The most obvious change from a patient’s perspective is the location of their follow-up appointments. Instead of having to travel to either Cannock Chase or Stafford hospitals, there are now nine clinic locations in:
Stafford (Greyfriars Therapy Centre and Wolverhampton Road Surgery) Cannock (The Colliery Practice, Cannock branch and Cannock Chase Hospital) Rugeley (Springfields Health and Well-Being Centre) Stone (Mansion House Surgery) Heath Hayes (Heath Hayes Health Centre) Penkridge (Penkridge Health Centre) Great Haywood (Hazeldene House Surgery)
Thought has been given to the location of the clinics with directions and public transport facilities clearly laid out on appointment letters. o At the clinic, barriers to communication have been minimised. o The clinics have been planned to give each patient the time to go through their issues and discuss them without being rushed. o Following a clinic visit, each patient will have a copy of their care plan. o In between appointments, patients can access advice from the nurse by leaving a telephone message or sending an email. Both methods of communication are advertised clearly on patient’s correspondence. o Each clinic has provision for someone to be seen urgently, which enables the service to meet NICE guidelines on the management of epilepsy whereby patients who run into difficulties should be seen within four weeks.
Additional services Although not a service provided by the NHS, the nurse has been involved in trying to improve support for people with non-epileptic attack disorder (NEAD). This is a condition often misdiagnosed as epilepsy. There are thought to be about 120 people in the area with NEAD. The nurse has been working with one of his patients in order to help her to set up a support group based in Cannock, which one of the only active groups currently running in the UK. The group has recently opened its own website at www.neadsupport.org.uk
As well as providing expertise to help patients manage and treat their epilepsy, the plan for the service has also set aside time for teaching, research and audit. The nurse is currently the principal investigator for two large, national multicentre studies. Education of other professionals has been a key part of the nurse’s role for many years. This has continued with the new community service.
Looking to the Future There have been uncertain times for health care in mid Staffordshire over the last few years. Recent recommendations about the future of mid Staffordshire NHS foundation trust, having been accepted by the Secretary of State for health, are beginning to give clarity about health services for people living in the area. The two clinical commissioning groups have been very clear that they want the epilepsy service described in this document to continue, although there remains some uncertainty about which trust will actually run it. There is a great opportunity in working with larger trusts to improve the epilepsy service, particularly in terms of specialist diagnostic procedures which were previously not available locally such as video telemetry and ambulatory EEG. With the support of the local CCG’s, the epilepsy service in mid Staffordshire is set to go from strength to strength.
Lead Epilepsy Nurse Department of Neurology Stafford Hospital Weston Road Stafford ST16 3SA Source A Community Support Service for the Epilepsies Stafford and Surrounds and Cannock Chase CCG’s, Final specification, July 2012