OBJECTIVES: Investigate MSers’ experiences of health and social care services in long-term neurological conditions in England.
METHOD: Cross-sectional survey of 5209 members of the Motor Neurone Disease Association (MND, n = 890), Multiple Sclerosis Society (MS, n = 2345) or Parkinson’s UK (PD, n = 1974). A questionnaire on patient experiences of health and social care was completed by 2563 (49%) (505 MND, 1157 MS and 901 PD).
RESULTS: A mixed picture of experiences of health and social care in MND, MS or PD was found with few problems reported for some aspects of services such as obtaining information about medication (n = 117, 6.1%). In contrast, problems with planning and integration of care were reported frequently, with 78.0% of people not having a care plan and 61.9% reporting that services do not collaborate well in planning care. Other problems included delays with diagnosis, information about medication side effects, and management of conditions whilst in hospital. Significant differences between the three conditions were found for most aspects of care, with MNDers generally reporting fewer problems. The findings highlight which areas of health and social care need to be improved and monitored. While a larger sample size was obtained than in other studies, possible limitations include the sampling frame and the 49% response rate.
CONCLUSION: Planning and integration of care are key areas that require improvement.
…The UK National Institute for Health and Clinical Excellence (NICE), the body that appraises treatments for the NHS, can expect to come under fire as a “perfect storm” of financial and organisational pressures on the health and social care systems approaches, a conference has heard….
…NICE’s remit for producing guidance and quality standards on social care will expand on 1 April 2013….
…Its chairman designate, David Haslam, told a Westminster Health Forum seminar…. the effect of an ageing population and increasing cost pressures in health and social care meant that difficult funding decisions would have to be made….NICE may well be part of the solution to the problem of “postcode lotteries” in health services, he said, but any organisation that was part of making health related decisions linked to the issue of cost, when faced with a finite budget, would face real criticism, he said….
…NICE as ideally placed “to take the blame.”…
Haslam, … , said that the boundary between the NHS and social care was “extraordinarily blurred.”…
…“No one in their right mind would have devised a system from scratch in which [the organisation of] health and social care are different,” he told the seminar in London on 31 January….
…He said that the government’s restructuring of the NHS and public health systems had led to lack of overall clarity and that it was vital that NICE worked well together with the Care Quality Commission and NHS Commissioning Board to deliver coherence….
“We do face this perfect storm of confusion and duplication in the brave new world that faces the NHS after 1 April,” he said.