People with long-term health conditions do not feel in control of their care

Nearly a third of patients with long-term conditions are not satisfied with their care, according to a new survey.

The research carried out by the Institute of Public Policy Research (IPPR) found patients would like to feel more in control of their care, with over half saying a named contact for telephone support and advice would reduce the number of times they saw their GP, went to hospital or used A&E services.

Over 15 million people in England have one or more long-term health conditions, with 70 per cent of total health care spend devoted to caring for people with long-term conditions.

The study found that 70 per cent of patients would feel more in control if they had access to their medical records and 61 per cent would if they had peer support from people with similar conditions.

Fifty-six per cent said a care plan would make a difference and 31 per cent said enabling technology.

Catherine McDonald, IPPR health fellow, said: “People with long-term conditions want more control and to be recognised as experts in their own condition. To put patients in control they must have access to the relevant information and support: such as a named contact, better data and support from others with a similar condition.

“The impact of long-term conditions on people’s lives varies considerably. People with long-term conditions are the experts on the nature of their conditions and the impact on their lives. We need to move to a model where this expertise is recognised and used to inform decisions about care management.”

She added: “Empowering patients is proven to improve people’s health and the quality of services they receive. But while there continues to be a lot of good intentions surrounding empowerment, it is not embedded across the system – so we must look to change this and our collective expectations.

“People with long-term conditions currently only see a medical professional for around three hours a year, so it is essential that people are given the support, information, tools and knowledge they need to help care for themselves.”

The IPPR would like to see people with long-term health conditions being given a named single point of contact for day-to-day enquiries,. better information and advice: with patients able to legally own their own medical records with free access to them on demand and patients offered advice and coaching about how to self manage, plus peer-to-peer support and healthcare plans.

George McNamara, head of policy at Alzheimer’s Society said: “People with dementia are the most vulnerable in society and many of them are being let down by the fragmented health and social care system. Cuts to social care budgets mean that councils are too often providing the bare minimum of care. Having to face fifteen minute home care visits by a different carer each time would be distressing for anyone but for someone with dementia, that inconsistency can be particularly troubling.

“We need a system put in place which works for people rather than ridged uncoordinated systems that fail to meet the needs of those living with long term conditions. By 2015, 850,000 people will be living with dementia, yet shamefully many are being let down. Change and reform is long overdue. We need strong and decisive leadership alongside vital investment in order to deliver a truly person centred health system.”

The House of Commons Health Committee said that by 2016, the cost pressures on the NHS will reach an additional £4bn per year, if nothing is done to improve the rate of prevention of long-term conditions.