On the 6th March 2012 I was one amidst a throng of 1000 lobbyists present at Westminster to register individual and collective concerns as social care service users. The day consisted of guidance in lobbying from non-profit organisations and with personal experience at hand, we spoke with MPs, who will have an opportunity to debate the content of the imminently expected White Paper on Social Care and ultimately vote it in or out of further consideration.
The ‘Care and Support Alliance’, a consortium of fifty non-profit organisations who “represent and support older people and disabled people with long term conditions”, took the lead in ensuring that those directly affected by the white paper’s implications remain visible to policy makers. The alliance are concerned that the paper’s proposals – if ratified – may fail to adequately fund for a service that is sustainable, effective and financially fair and therefore undermine the dignity, interests and opportunities of care service users in the long term. Given the scope and intensity of recent reductions in government spending and the oncoming surge in demand for public services from an “ageing society,” scrutiny is therefore crucial. Any ensuing policies must contain a fair and appropriate response that accommodates for the vast range of service user interests.
As well as being placed in the physical heart of the decision making process, lobbyists were also given opportunities for wider engagement with policy issues throughout the day. One example was the world’s first ‘twitter lobby’ (#twobby), which enabled care users unable to travel to London to express their views and experience to lobbyists and MPs, the former of which could access computers through the event’s entirety at lobby HQ Church House. Engaging care users in politics this way has two very simple but crucial effects. At the system level, it makes democracy more representative, but it also empowers individuals – who may otherwise feel marginalised – by showing them their value in the political process. Every effort was made to educate us on the suggestions of the Dilnot Commission, “an independent body tasked by Government with reviewing the funding system for care and
support in England” and we were told about the ways we would be benefited if our MPs chose to voice support for them.
I spoke with my MP Alan Whitehead as a representative for Rethink, a non-profit organisation whose support for mental health patients “spans from acute and long-term care through to practical support and advice”, directly benefiting over 60,000 individuals affected by mental health issues in the UK every year. Beyond providing assistance for care users, Rethink also commission research, enter consultation with government and – most crucially – compile as many individual case studies of experiences as service users as
possible. The purpose is not only to educate, but to challenge the idea that there are negative associations with discussing these issues in the first place.
Rethink considers this necessary because myths are so widely circulated in the public discourse on mental illness that it is possible not to consume them. Even the open-minded majority willing to understand the issues in greater depth come from a skewed starting point. Media coverage of violent incidents committed by people with mental health conditions is disproportionate and conforms to a narrative almost biblical in its understanding. This is not necessarily deliberate, but when the percentage of mental health patients who go on to exhibit behaviours like that of the “possessed” is marginal, it’s
important to ask why the distinction is still being made. These stereotypes are not innocuous. It’s common to feel impeded when applying to jobs if you feel that individuals and institutions are likely to presume you are a ‘lurking danger’ or less capable than the other candidates.
Another case in which the media sanctify drama and narrative at the expense of factual content is in sensationalist reporting of celebrity ‘meltdowns’. The discussion that arises from the misrepresented issues is less sober than any ‘troubled starlet’ on any given night. A free media has the right to cover stories on mental health, but it needs to change its discourse. It had to accommodate for the reality that care users can be unlimited in
capability once a combination of effective healthcare and social support has been attained.
A model adhering to the Dilnot recommendations will be key to achieving that. Whilst it’s unrealistic to presume that legislation can fully satisfy every individual’s myriad needs, one that tries to help limit the impact of their condition on their wider opportunities can hopefully be realised.
The Dilnot Commission presented these suggestions to the government in July 2011:
Individuals’ lifetime contributions towards their social care costs should be capped at between £25,000 and £50,000.-
– The means-tested threshold, above which people are liable for their full care costs, should be increased from £23,250 to £100,000
– National eligibility criteria and portable assessments should be introduced to ensure greater consistency
– All those who enter adulthood with a care and support need should be eligible for free state support immediately rather than being subjected to a means test.
My interest in politics was partly extinguished towards the end of 2010. Previously, I had assisted in my college’s mock election, canvassed with the Liberal Democrats and organised a rally for Take Back Parliament. I was looking forward to extending my involvement in politics at Exeter University and starting life away from home.
Given that three promising years were seemingly in place, I felt heretical leaving college conscious of the fact that there were clear and evident problems in my life. I was confused and distressed because I didn’t know why I was finding the world around me so alienating and threatening. An unplanned gap year came when I had to come to terms with a diagnosis of Bipolar Disorder Type II. Luckily, I was able to recover due to the genuinely excellent basic provision of treatment available to me.
Still, it’s sometimes difficult to realise that your opinion matters in society when it deems you incapable of performing specific civic duties. These feelings of marginalization are not simply unfounded but stem partly from constituted discrimination. As it stands, I can’t sit on Jury Service, or could be permanently and irrevocably removed from my role if I were an MP detained under the mental health act. These are far from the only examples.
But symptoms of mental illness are far from exclusive. Nor are they as determinate in impact as we may think. Although the figure is disputed, it’s been suggested nonetheless that one in three individuals will experience depression during their lifetime. With the stresses of modern living, significant unemployment and population increase, the net numbers affected in Great Britain will only rise. The impact of these symptoms on people’s abilities to lead day to day lives is greatly varied, but is worsened in the face of the anxieties caused by stigma.
If it’s true that people’s mental states respond to positive external stimuli, it makes sense to make society as accomodating as possible to the subtleties of mental illness. Fortunately, there has been support for affirmative action from Lord Stevenson, who set a parliamentary discussion on a Mental Health Discrimination Bill in motion in the House of Lords. The bill proposes to ammend sections of the Mental Health Act and Juries Act, towards the end of illegalising discrimination in certain areas of employment. Ultimately, the impetus of the wider public will be vital to shaping the progress of this debate. Gathering as many individual case studies of mental health experiences and using them to illuminate the policy process is definitely a significant step, and I’m grateful to Rethink for the opportunity to be involved.