There are several venues and types of direct interaction between patients with neurological conditions and neurology services. We have divided them into those delivered from a hospital setting and those from a community setting.
Patients are frequently referred to neurologists for advice on diagnosis and management of their symptoms. For example, patients with numbness and tingling might have carpal tunnel syndrome, a cervical disc prolapse, multiple sclerosis or a brain tumour. The vast majority of patients will be referred to ‘scheduled’ general neurology outpatient clinics, and if urgent, ‘unscheduled’ services based in emergency (‘hot’) outpatient clinics and acute medical units. These will be delivered by consultant neurologist-led services located close to the patient’s home. Inpatient neurology services will be available 7 days per week and ideally co-located with the acute stroke service.
Access to hospital services
Patients enter this pathway as an unplanned emergency admission with new or existing neurological problems (such as thunderclap headache, blackouts, inability to walk) or with an unexpected worsening of a pre-existing neurological condition.
Patients may need to be seen in an inpatient bed, in emergency departments (accident and emergency unit and medical admissions unit), in an acute medical day-case facility, hyperacute stroke unit, intensive care unit, high-dependency unit, or on a specific neurology ward.
The types of symptoms seen are varied, but usually patients have acute symptoms that require assessment and advice within 24 hours. In selected cases, there is an option of transfer to a specialist neurology ward, which will be in a neurology or regional neurosciences centre. Consultant neurologists work with other specialists including acute physicians, intensive care anaesthetists, and physicians from other specialties such as infectious diseases. The majority of patients with acute neurological disorders seen in hospitals have been cross-referred internally, rather than direct from their GP.
The availability of acute neurology services is variable, particularly for patients who do not live close to regional neuroscience or neurology centres. Further information is given in the Royal College of Physicians (RCP) and Association of British Neurologists’ (ABN) working party report on local adult neurology services and the Association of British Neurologists’ acute neurology survey from 2017.
Patients in this pathway will have been referred by their GP or other hospital consultant specialist either via the NHS e-Referral service in England, or by being placed on a waiting list to be seen in an outpatient clinic. Scheduled care can be delivered at a number of sites including regional neurosciences centres, neurology centres, or DGHs, community clinics or GP surgeries. Patients seen include new referrals requiring diagnosis and advice and follow-up patients with short-or long-term conditions. Many units offer a telephone and email advice and guidance service to GPs to avoid unnecessary referrals and reduce the requirement for follow up consultations. This study into using email triage showed it was a safe and effective method of referral. Patients with neurological problems should be seen for consultation as close to home as possible. Many patients with long-term neurological conditions can be monitored by specialist nurses and GPwSIs, provided they are adequately supported by consultant neurologists.
Rapid access clinics
Rapid access clinics can avoid the requirement for an urgent admission if the patient can be seen in a clinic within 1–2 weeks – for example a first epileptic seizure or a relapse of multiple sclerosis.
The number of neurology outpatient referrals and amount of inpatient neurological activity currently funded by CCGs varies widely across the country as shown by this data from Public Health England (opens PDF).
Since April 2015, neurological referrals from GPs are commissioned by CCGs rather than NHSE. Consultant to consultant referrals in regional neuroscience centres continue to be funded by NHSE. Specifications for specialised neuroscience services and specialised adult neurosurgery are covered by NHS England.
From 2016/17 it is proposed that specialist neurological referrals will be collaboratively commissioned, although the details are still to be decided.
Community support services
People with neurological conditions are frequently left with long-term disability requiring effective rehabilitation to increase their independence, enhance their quality of life, and, where relevant, maximise their ability to return to work.
As described in the ABN Commissioning Toolkit (opens PDF, 413KB), around 40% of people who have a stroke will be left with moderate to severe impairments requiring specialist care. Around 10% will require lifelong care in a nursing home. Some people with conditions such as multiple sclerosis (affecting 1:800 of the population) experience lifelong fluctuations in their symptoms requiring long-term care. Many patients with conditions characterised by progressive neurological deterioration such as Parkinson’s disease and related disorders eventually result in increasing dependence on services. Acquired brain injury and spinal cord injury are common. In 2013–14, 348,934 people were admitted to hospital with head injuries, many resulting in long-term physical, behavioural and emotional consequences. Many people with less common disorders, such as genetic (eg muscular dystrophies), infectious (eg meningitis), or malignant (survivors of childhood and adult brain cancers) diseases, undergo community-based treatment.
Routes of access to community services
The 22 major trauma centres are linked to major trauma networks for adults and children in England. People treated at these centres, as well as people with traumatic and non-traumatic nervous system disorders from neurology and neurosciences secondary and tertiary centres, require access to community services for continuing care. Some people commence their care as hospital inpatient or outpatient, before transitioning to community services. Many patients with progressive neurological conditions, such as dementia, access community services from primary care and sometimes culminate in residential care.
Some CCGs fund community-based disease specific specialist nurses (eg Parkinson’s disease), which can work well if appropriately supported by local consultant neurology services with appropriate clinical governance structures in place.
Effective community services reduce unscheduled admission rates to secondary care of patients with long-term neurological conditions. The wide range of neurological conditions means that patients need access to both generic and specialist skills in neurology and neurological rehabilitation in the community. These services are required to implement care pathways for patients with long-term neurological conditions in line with National Service Framework for Neurological Conditions (opens PDF, 1.27MB) recommendations that people are treated in the least intensive setting for their needs.
People need access to skilled rehabilitation and symptom management across the pathway and this means access to specialist care from an appropriately trained physician (neurology or rehabilitation medicine) in the patient’s home or community. To enable this, one approach is shared appointments between neuroscience/neurology centres and local community rehabilitation for both therapists and rehabilitation medicine consultants.