Dr Ron Culley, Chief Executive of Quarriers, shares his thoughts and calls for a better future for epilepsy services in Scotland.
‘The history of epilepsy can be summarised as 4,000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma.’ Rajendra Kale, neurologist
Quarriers has been delivering clinical and social support to people with epilepsy for a long time. Just the other day, one of our Trustees sent me historical documentation passed to him by a friend – dated 1918. It described our then service as a ‘colony of mercy for epileptics’ – hardly language we would use now but it serves to make the point that we were working in this area fully thirty years before the NHS existed.
The input we provide in 2020 is, of course, a world away from the services we operated a hundred years ago, not least in the world class William Quarrier Scottish Epilepsy Centre in Govan. The nation’s best neurologists, psychiatrists, psychologists, and specialist nurses staff the centre, providing specialist diagnosis and clinical pathways for people with complex epilepsy. But it is our less well-known epilepsy outreach service that I want to discuss in this article.
There is growing evidence (this link will take you away from our website) that isolation can be harmful to well-being. We have all been talking about that in the context of Covid-19, but in truth the dangers of isolation have been known for some time. I spent an earlier part of my career in the Western Isles and with its expansive geography and super-sparsity, it was a challenge I came across time and again.
In my new role as Chief Executive of Quarriers, I see the same challenges, especially for people with epilepsy. Around 54,000 people in Scotland have epilepsy, of whom 28,000 have their symptoms controlled through medication. Around 12,000 people are estimated to have a misdiagnosis of epilepsy or are prescribed ineffective and potentially harmful drugs while their true condition is untreated. It is also notable that the prevalence rate of epilepsy among people with a learning disability is twenty times higher than for the general population.
Although clinical diagnosis and assessment is hugely important, so too is the provision of social support – because the condition can act as a barrier to socialisation. That is not only my observation – it comes more importantly from a retired neurologist, Professor Ian Bone, whose book on the history of epilepsy I am reading (and full disclosure here – proceeds are raising vital funds for the William Quarrier Scottish Epilepsy Centre). Sacred Lives (this link will take you away from our website) describes how society perceives people with epilepsy and why negative perceptions and misconceptions result in stigmatisation, loss of opportunity and social isolation.
Our epilepsy outreach team see this lived reality every day, as they support people to manage their condition. I was recently listening to their testimony about how they have addressed the challenges of isolation created by Covid-19. They have used technology to engage differently with the people they support. One of the central challenges the team face is the vast geography of north-east Scotland – the principal area in which we provide our service. The team now check-in with people through Facetime or Zoom or WhatsApp or whatever digital media platform pleases the people we support. On the other hand, there is nothing quite as good as visiting a person at home. Technology can mask what is really going on for people – it hides the cracks. Being face to face with someone in their living room – well, the challenges in someone’s life can be revealed. That is why epilepsy outreach work is so important – because it brings a social intervention to something so often simply seen as a medical problem.
So, what is to do be done? Three things, in my opinion. First, we need to raise awareness and talk more about epilepsy – to continue to break down stubborn stigmas. There are any number of charities supporting long-term conditions, all competing for air space. That is one of the fundamental values of The ALLIANCE – it unites those interests and offers a pedestal to improve visibility on what might otherwise be perceived a niche interest – and allows us to identify cross-cutting themes like social isolation.
Second, we need to better understand the impact of social intervention on well-being. There is increasing evidence of this at a general level and we are beginning to see it reflected in public policy decisions. For example, changes to the primary care system introduced in the last few years are as much about link workers, life coaches and benefits advisors as they are about medical pathways – we now recognise that to get the best out of our GPs, they need to tap-in to a much wider panoply of social services. But the importance of social intervention for people with epilepsy is still not fully articulated.
Third, and possibly most importantly, we need to map services and fill in the gaps. There are only a few providers in Scotland doing this work – Quarriers is one; Epilepsy Connections is another. But the point is we are not offering an equitable service across Scotland. We have a strong partnership with some of the NHS Boards – but what we need is a national approach without any dark patches – we want to be able to support everyone with epilepsy, irrespective of where they live.
My hope is that over the next few years, we can give this agenda the prominence it deserves – so that someone looking back a hundred years henceforth will identify this coming year as the time we really started to understand the importance of epilepsy outreach services – and started to develop a national approach which reflects that.