Long term conditions are not ‘managed’ by health, social care or other government services, but by the people who live with them.
For us and our carers, this is a 24/7 reality. As long as we maintain independence, our contact with services is limited to tiny but significant windows.
We, more than any care professional, determine our outcomes. Therefore a strategy that seeks to affect outcomes can only succeed to the extent it engages, activates and mobilises us.
There are two linked sets of challenges here – at the individual and service levels.
To manage successfully and achieve the best possible quality of life, each individual needs to be ‘activated’ in pursuing their goals.
This is difficult where our conditions seem to rob us of capacity or bring on depression.
But research has shown that even the most challenged patients can be encouraged to manage actively, using ‘baby steps’ that accord with their own particular felt needs and aims; that levels of activation can be measured; and that professional training in health coaching makes an impact.
Activation requires a change in culture from curative to supportive approaches. Patients benefit from supportive action to raise their health literacy (knowledge and understanding of their condition and of the options, and how to use that knowledge), educate them for self-management, involve them in consultations and decisions, and plan their goals and the care packages that help to achieve them.
In the new NHS this should all fall under commissioners’ duty to ‘promote involvement of each patient’, and providers’ regulatory requirements.
At the service level, the main change that people with long term conditions want to see is ‘care coordination’.
Care ‘webs’ produced by patients and carers show the bewildering complexity of services they need to access.
Evidence from patient organisations including members of National Voices shows what people most want is access to a known care coordinator who both knows about the patient and their condition, and is able to plan and arrange their packages of care.
This is not always the same as ‘integration’ – for the person at the centre, coordination matters more than whether the services are actually merged or joined together. National Voices has said that supposed ‘integrated care’ programmes that do not provide coordination have failed.
In order to develop a new deal for people with long term conditions, the relevant statutory bodies need to harness patient, service user and carer voices in the ‘co-design’ of services.
For commissioners this means giving service users parity of voice in a process to re-imagine and then re-commission services.
For providers it means building service user feedback and decision power into their continuous quality improvement processes.
Local Joint Strategic Needs Assessments and Health and Wellbeing Strategies are the obvious place to start, with voluntary and community sector groups and patient, carer and service user bodies seen as partners to identify needs, investigate user preferences, co-design strategies and monitor their implementation and effectiveness.
National Voices is a membership organisation for charities – this is how we were set up. We work with and through our members to ensure that the perspectives of patients and service users – which are critical to our work – are heard and acted upon.
Don’s blog is somewhat hypocritical since National Voice does not allow individual patients to join its organisation but about disempowering patients by allowing middle class run charities to deliberately steal the voice of real patients since they are paid by the government to shut patients up unless they are accept a medical model submission and believe they are worthless or be misled by charities to demand they have a god given right to red carpet treatment because they are sick and therefore entitled to steal benefits from disabled people without question. People need to be empowered not disempowered by money grabbing charities like National Voices to keep the middle class in wasteful jobs.