People with neurological conditions such as epilepsy, multiple sclerosis and Parkinson’s disease suffer “neglect” by the NHS, claims a report by an alliance of charities representing patients.
Poor care means that too many of the 8 million patients in England with a neurological problem are admitted to hospital as emergencies, experience delays in having their condition diagnosed, and receive too little information about what is wrong with them, according to the Neurological Alliance.
The alliance is a group of more than 70 charities that work with people who have suffered damage to their brain, spinal column or nerves either as a result of illness or injury. Its members also include charities representing those with motor neurone disease and rarer conditions such as dystonia.
An alliance report accuses the NHS of not taking patients with neurological conditions seriously enough, and warns that the coalition’s health reforms will do nothing to help them. “Policy levers for improving care in the new NHS landscape are not being mobilised to support improvements to neurological services.
“Five of the six key policy levers, including national outcome strategies and the commissioning outcome framework, are not currently being used to improve services for people with neurological conditions,” it claims.
This is despite neurological services taking up more than 5% of overall NHS spending, which makes them the service’s eighth largest category of spending, and the fact that one in six people are affected, it adds.
The report urged the plethora of new NHS bodies being created next April by the Health and Social Care Act to tackle “the legacy of neglect which has resulted in unacceptable variations in outcomes and higher than necessary costs”.
Inadequate and poorly co-ordinated care of such patients by GPs and other community health and social care services result in undue numbers of emergency hospital admissions, it says.
Research by the alliance uncovered what it called “a spending lottery” on neurological services by NHS primary care trusts (PCTs). While Central Lancashire PCT spends £11.37m per 100,000 of population on them, Haringey Teaching PCT in London spends just £4.31m for the same number of people.
Similarly, there is a sevenfold variation in the proportion of PCT spending on these conditions that goes on emergency care. In places such as Liverpool, Sunderland and Wandsworth in London, it is more than half. “Not only are emergency admissions distressing for patients and extremely costly for the NHS, but they are often an indication that conditions are not being well managed within primary care, community and social care services,” the alliance claims.
Arlene Wilkie, the organisation’s chief executive, said action was urgent because half a million people a year are diagnosed with a neurological condition and the number of patients with one is set to skyrocket in the next decade.
“If the NHS reforms do not address poor standards of care for people with neurological conditions, then they will fail. The government has said that managaing health reforms should be all about outcomes, but it has failed to identify the outcomes which matter to people with neurological conditions,” she said.
The charities want the Department of Health and new NHS Commissioning Board to devise indicators for quality of care and patients’ outcomes that will prompt the service to overhaul such services.
The Department of Health said that the commissioning board is already planning to drive improvements to services for those with mental health problems, dementia and neurological conditions by ensuring that some of the first strategic clinical networks set up next year cover them.
“We want NHS services to focus on what matters to people most. This will make sure that people with neurological conditions get integrated care and the support they need at the right time and in the right place,” said a spokeswoman.
“We are working closely with patient groups and health professionals to develop a new Long-Term Conditions Strategy. The NHS commissioning board is already planning to drive improvements to improve mental health services, dementia and neurological conditions,” she added.