Epilepsy is the most common, serious neurological condition in the world. A brief disturbance in the brain’s normal electrical activity causes the nerve cells to fire off random signals; the result has been described as an ‘electrical storm’ that causes a temporary overload in the brain. In Scotland, around 55,000 people have the condition – more than one in every 100.
Despite being a relatively-common condition, the services that are available to support people with epilepsy vary greatly throughout the country. Not every health board has an epilepsy specialist nurse (ESN) and so the support that patients receive can differ from area to area.
Accessing the right help and support can be especially difficult in rural locations, such as Dumfries and Galloway. Lying in the south-west corner of Scotland, Dumfries and Galloway’s population of 150,000 people is spread over a massive area covering 2,400 square miles.
Back in 2010, a local support organisation called the Dumfries & Galloway Epilepsy Group expressed its concerns over the lack of help for epilepsy patients. This was one of the factors that prompted National Health Service (NHS) Dumfries & Galloway, the local health board, to contact national charity Epilepsy Scotland to discuss the introduction of a specialist service in the area.
Chief executive Lesslie Young and her team were able to offer the services of Grant Wright, an ESN employed by Epilepsy Scotland, who was seconded to NHS Dumfries & Galloway from June 2012 through until May 2015. Young brought aboard three pharmaceutical companies – UCB Pharma, GlaxoSmithKline (GSK) and Eisai, which at the time were all working in the field of epilepsy – with Eisai providing £10,000 for start-up costs and then UCB and GSK committing to financial support on a monthly basis over the full three-year project.
“This has been a truly ground-breaking collaboration,” explains Young. “We’ve brought together the public, private and voluntary sectors to create a project that is unique in the UK. This has set a new benchmark when it comes to real partnership working.
“Historically, industry and the NHS have not been natural bedfellows. They didn’t have a good history or a good relationship. But we were able to overcome those historical challenges by giving evidence of partnerships in other parts of the UK in which the NHS and industry had worked together.
“Epilepsy Scotland became the conduit between the NHS and industry. We were paid by industry and then we delivered the service to the NHS.”
Steve Turley, managing director of UCB in the UK and Ireland, believes that the ability to bring together the public and private sectors has been one of the greatest achievements of the project. “If you look at the 1980s and the 1990s, the way that the pharmaceutical industry promoted its medicines was fundamentally about transactional relationships,” he explains. “The company would talk directly to the prescribers about the attributes of a medicine in a transactional manner and the true benefits for the patients didn’t come across.
“I think that the nature of the relationship between the pharmaceutical industry and the NHS raised some eyebrows and had some question marks set against it with regards to
the appropriateness of that relationship.
“We’ve now moved to a point where I think both the industry as a whole and the NHS recognise that we cannot continue the way that we did through the 1980s and 1990s. Yet there is a lot to be said for an appropriate collaboration and relationship between the industry and the NHS in order to further patient care.
“So for us, at the most fundamental level, this relationship with Epilepsy Scotland and this project were about first of all demonstrating that the industry and the wider healthcare system can work together in a way that is appropriate, transparent and for the ultimate benefit of patients. I’d say as much as anything it was a proof of principle around how that relationship should be structured and should work.”
UCB and GSK continued to be the private sector partners all the way through the project, with representatives from UCB joining those from Epilepsy Scotland and NHS Dumfries & Galloway at the Scottish Parliament on 9 March, 2016, when the final report from the scheme was published.
Over the course of three years, Wright worked with NHS Dumfries & Galloway to raise awareness about epilepsy and to highlight the need for better service provision. Instead of carrying his own caseload of patients, Wright trained general practitioners (GPs) and practice nurses at some of the 34 medical practices spread throughout the area, along with hospital consultants, nurses and other healthcare workers in acute hospitals.
Wright also carried out an audit of primary care in GPs’ practices. After examining the treatment of 168 patients, he discovered a raft of areas that could be improved, including that: 50 per cent had no record of who had diagnosed their condition; 44 per cent had no care plan; only 43 per cent had been given advice regarding pregnancy; and 7 per cent had no record of seizure classification.
The project then went on to deliver significant service improvements, which included: hand-held patient records; toolkits for training NHS staff; and medication and care plan reviews in accordance with national guidelines. Patients and their carers were also given encouragement and assistance to seek further help from patient support groups and other organisations to manage their conditions. Perhaps the most far-reaching consequence has been the appointment of a full-time ESN by NHS Dumfries & Galloway. Wright’s secondment was extended for a further two years so that he could act as a mentor for the new ESN.
Patients in Dumfries and Galloway now have accelerated access to medical treatment from a trained specialist epilepsy nurse. Previously, they would have to have waited for several months to have an appointment with a visiting neurologist.
“There’s now a service there that wasn’t there before as a direct result of the project,” says Young. “They will have a very skilled ESN of their own, who will continue to provide that service in Dumfries and Galloway.”
While the benefits for people with epilepsy are clear to see, what prompted UCB to become involved in the project? As well as demonstrating that partnerships can be forged between the NHS and industry, are there other benefits for the company? “If patients in Scotland are being able to access better epilepsy services then hopefully those services will also be able to make best use in the appropriate way of some of the innovative medicines that we specialise in,” explains Turley, who was born and brought up in Falkirk. “So indirectly, down the line, we hope that the right patients will be able to benefit from our medicines – but clearly that was not one of the overt criteria for getting involved in the project in the first place.”
While having a permanent ESN will have a long-term effect in Dumfries and Galloway, Epilepsy Scotland hopes that it will be able to use the project as a model for other parts of the country too. “We have looked at the possibility of using a similar model in the Borders,” explains Young. “It could also be applied in other rural areas, such as Argyll and Bute.
“One of the challenges at the moment is that Scotland doesn’t have a full complement of ESNs in each area, so I would have to bring in someone from outside Scotland, otherwise we would be robbing from one area to help another.”
Beyond epilepsy, the model of bringing together the NHS, the private sector and the voluntary sector could also be applied to other conditions. “The model itself is quite adaptable,” Young says. “It is replicable in terms of both the geographical areas and in condition. ‘So, for example, if a patient representative group for diabetes wanted to use the model then that would be absolutely fine, anywhere in the country. The key thing for success is that you have to have a champion on the ground. You have to have somebody who has a passion for improvement in the service provision for the condition, and who is also willing to be the advocate of the project on the ground. And that sounds very easy, but it’s not.
“So I need a champion on the ground and a commercial partner to make it work. But the commercial partner doesn’t necessarily have to be a pharmaceutical company. With epilepsy, for example, it could be the company that makes the leads for electroencephalogram (EEG) machines that are used to record brain activity.
“There are lots of companies that could be approached that have connections to lots of different conditions. This type of funding mechanism might also appeal to a philanthropic organisation or to a large company that wants to fulfil its corporate social responsibility (CSR).”
One organisation that is already looking at the approach is the Crown Office & Procurator Fiscal Service (COPFS), the public prosecution office in Scotland. At the time of the launch of the project report, COPFS was exploring the possibility of using the business model in developing diversion strategies from prosecution for appropriate cases.
Young’s comments about extending the model into other areas are echoed by Turley. “I think that, as an industry, and UCB is very much at the forefront of it, we believe strongly that, whilst we have some goals that may be different to the NHS, we actually have a lot of common goals, not least to do better for patients,” he says.
“If we’re going to do better for patients then the way we would do that is through collaboration and the Dumfries and Galloway project was maybe a pilot to demonstrate that we can work well together. We would very much want to roll that out in other areas. I think the important thing to recognise is that we want to work in collaboration and we want those relationships to be transparent.
“At the same time, let’s not avoid the fact that we are a commercial organisation and we should stand tall about that. There’s nothing wrong with that but it should be transparent.
“What I would like to do is to roll this out further and show that we’re able to effectively integrate those commercial needs with the needs of the NHS and with patients to have a true common goal that benefits everybody.
That will be what we’ll look at as we try and expand the thinking beyond the Dumfries
and Galloway project.”