Reform of our health and social care services cannot only be an ambition but is an urgent requirement. The recent annual report from the Auditor General on NHS Scotland made this extremely clear. If we are to meet the current and future health and care needs of our country, we have to change how we deliver care and treatment, with more services based in our communities, meeting individual care needs.
Audit Scotland’s annual report said the NHS was “seriously struggling to become financially sustainable” and the Auditor General Caroline Gardner said the integration of health and social care was too slow and staff were under intense pressure. The conclusion was that Scotland could face a £1.8bn shortfall in less than five years if it is not reformed.
Change is urgently needed but the pace of change is too slow. We have achieved a consensus on the need to integrate health and social care services and reform social care. Health and Social Care Partnerships have been established to bring about more effective collaboration, but progress is patchy. Yet by embracing rather than resisting reform of health and social care, we have the opportunity for transformational change which will benefit the thousands of people in our country who are supported by care services.
For me social care has always been profoundly about human rights. It is about giving the citizen control and choice, voice and agency, decision and empowerment. These principles underpin the Scottish Government’s flagship social policy of Self-directed Support, which seeks to give people more control over the care services they receive. The policy means local authorities now have a legal duty to offer people eligible for social care four options on how to use their personal budget. The four options are direct payments; an Individual Service Fund held by the local authority and allocated to a provider of your choice; the local authority arranging support on your behalf; or a mix of these options.
Human rights and social care practice come together in our Self-directed Support legislation in Scotland which unapologetically grew out of the independent living movement of the learning and physical disabled communities in the 1970s. With the closure of large-scale institutions there was an emphasis on enabling individuals to live more independent lives. Policies and practice at the time and since emphasised the importance of building social care supports around the life of the individual rather than expecting the individual to fit into what services were available. A one size fits all approach was replaced by the urge to develop and offer bespoke individual services and supports.
A personalised approach has the potential to benefit and empower people with a range of conditions and care needs. This is why we have been keen to assess levels of awareness of Self-directed support among those groups of people who could potentially benefit most.
We have been working with Royal Blind to research awareness of Self-directed Support among people with visual impairment. People living with sight loss require care which meets their specific needs to enable them to flourish and foster their full contribution. Self-directed Support offers them the potential to ensure they are provided with specialist support, equipment and accessible information to help them live well with visual impairment.
There are around 188,000 people in Scotland living with significant sight loss, around three quarters of whom are over 65, and this number is projected to increase to over 200,000 by 2030. This means Scotland requires a social care system which can support an increasing number of people with sight loss.
Self-directed Support has the potential to benefit thousands of people with sight loss, enabling many to maintain their independence and live at home for longer. So it is disappointing to learn that there is low awareness of Self-directed Support among many people with sight loss. Over 100 people with sight loss were surveyed by Royal Blind and Scottish War Blinded to learn their views and experiences of Self-directed Support. When asked the question “have you heard of Self-directed Support,” two thirds of respondents said they had not. Only five respondents said they had a support plan funded through Self-directed Support. Over 60 percent of respondents had never been informed of the budget available to them for their care and support.
If I am living with a lifelong condition or need support in any way because of life circumstances or age then I most certainly do want to have more choice and control both over who is in my life as a carer and what the nature of that support and care might be.
The critical importance of legislation like Self-directed Support is all about embedding that control and choice, building those rights with the citizen including fiscal and budgetary control. This is why it so frustrating that for too many people, including people with sight loss, the promise of Self-directed Support is not being realised. The legislation is now in its fifth year – bedding down should have long since passed. The excuses are running out and we are left with the conclusion that this human rights-based policy is being consciously ignored, blocked and underfunded, or that only those who shout the loudest are being given choice and control.
We are still defaulting to models and a provision of assessment and care which too often do not meet individual need and are economically unsustainable. This situation needs to change urgently if we are to secure sustainable models of care and the rights of people accessing care services to be fully included in our communities. There is little point in having fantastic legislation if there are is a collective failure to put it into practice. There is little point in having rights under the law if the obstacles to exercising those rights are growing every day.
Dr Donald Macaskill