OVER 1,200 people with epilepsy in Dumfries and Galloway are now getting help from a local Epilepsy Specialist Nurse (ESN) instead of travelling miles to other health boards, thanks to a successful new funding model of healthcare devised by Epilepsy Scotland.
This unique three-year collaboration with the NHS and pharmaceutical companies UCB Pharma and GSK means epilepsy patients also benefit from better equipped GPs, practice and learning disability nurses who have received epilepsy training and materials.
The outcomes of the innovative project report, including the new ESN post, will be shared with MSPs at tonight’s Scottish Parliament reception.
Epilepsy Scotland chief executive, Lesslie Young, explained: “Over a thousand poeple now have a better quality of care and direct access to local epilepsy services which the NHS board outsourced before.
“Services for people with epilepsy were virtually non-existent six years ago. We were invited by NHS Dumfries and Galloway to help but there was no funding available to finance an ESN post.
“Instead, we afforded that help through creating a novel business model where our own ESN was seconded to audit patient care and to train and equip health professionals using this truly original partnership of public, private and third sector organisations.
“Epilepsy Scotland developed this creative business model from scratch.
It has proved to be an effective model and one which brings unlimited benefits because it will work regardless of geography or health condition.
“A lack of ESNs is not unique to NHS Dumfries and Galloway. We hope others will accept and replicate the project model because epilepsy affects more people in Scotland (55,000) than type-one diabetes, Parkinson’s disease, multiple sclerosis and HIV combined.
“Other health boards can enjoy the great success of this initiative and there is scope for the collaborative model to be replicated outside of healthcare settings. We believe it offers a blueprint for success in developing epilepsy care in Scotland.”
The audit work of the project report which examined the treatment of 168 patients uncovered many areas for improvement in epilepsy services for patients including:
* 44 per cent had no care plan
* 50 per cent had no record of who had diagnosed their epilepsy
* seven per cent had no record of which kind of seizure(s) they have
* 49 per cent had no record of ever having had a specialist epilepsy review
* only 39 per cent had received information about common seizure triggers and lifestyle issues such as driving
* just one per cent were signposted to further support such as that offered by a patient group
Along with using the audit findings to adapt epilepsy training for GPs and practice nurses, the project has gone on to deliver other significant improvements. There are hand held patient records, tool kits for training NHS staff, and signposting for patients as well as medication and care plan reviews in accordance with national guidance.
Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn MSP, remarked: “This project represents precisely the type of beneficial cross-sector cooperation that the Scottish Government seeks to promote, with public, private and third sector bodies working together to make a positive difference to patients’ lives.
“I will be very interested to see how this project will grow, develop and potentially inspire other initiatives in the future.”
Steve Turley, UCB managing director for the British & Irish lsles, said: “Our determination to make the project a success helped us overcome a number of challenges, not least of which was communicating with everyone so that we all worked together.
“Being the first of its kind within the UK, the business model for the project presented uncharted challenges for the companies – all driving towards the same goal, improving care. Critical to the success of the project was benchmarking and gathering feedback to maximise the benefits of the specialist nursing post.”
Notes to editor:
1. Photo opportunity at the Epilepsy Services in Scotland – a Blueprint for Success Reception: Media can attend the Members’ Room in Holyrood on 9 March at 6pm when guest speakers Chief Executive Lesslie Young (Epilepsy Scotland), Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn, and Elena Coward (UCB Pharma) will be available for photos. Media interviews (without the Minister) will be held just after 6.45pm. Speeches begin at 6.05pm with the Minister speaking at 6.15pm. The event is hosted by Kenneth Gibson MSP. Only those with valid media passes to the Scottish Parliament can be admitted to the event.
2. Epilepsy Scotland works with people affected by epilepsy to ensure that their voice is heard. We campaign for improved healthcare, better information provision and an end to stigma. This common serious neurological condition affects one in 97 people. We represent the estimated 55,000 people with epilepsy, their families and carers. Our freephone Helpline (0808 800 2200) offers support and information. People can email (email@example.com), text 07786 209501, find us on facebook, use twitter @epilepsy_scot or visit: www.epilepsyscotland.org.uk
3. Scotland has just over half (34) of the 62 epilepsy specialist nurses (ESN) posts which are recommended for its population size by the Joint Epilepsy Council (1 ESN per 100,000 of the general population).
4. NHS Dumfries and Galloway area has a population of 150,000 which equates to 1,546 people (one in 97), of which around 1,200 are adults with epilepsy. Our Epilepsy Specialist Nurse provided three days a week to upskill health professionals and enabled them to deliver an improved service for adults with epilepsy. The nurse did not carry a caseload of patients. The NHS board committed staff time for professional training and mentoring while the pharma companies provided resources and practical support, including IT software to audit and track service improvements and cost effectiveness. There was absolutely no financial gain for the private sector. The initiative helped meet their goals for better patient-centred treatment.
5. In addition to seeing patients on a clinical basis, liaising with GPs and supporting the work of the lone consultant neurologist, Epilepsy Scotland’s ESN continues to train medical staff, develop practical tools for clinicians and enhance patient information resources. He is now working in collaboration with the consultant neurologist for NHS Dumfries & Galloway to reduce the long waiting list times for return appointments. This involves identifying and meeting with those patients who have already been diagnosed, and who need to be seen by an epilepsy specialist, but not necessarily by the neurologist.
6. As a direct result of this project, the local health board has continued to co-fund the part-time ESN position and have also recruited a full-time permanent ESN. The present ESN will train and mentor the new post holder for six-to-12 months in order to ensure a smooth transition.
7. Results from this joint working group project have generated significant interest and the project is currently a finalist, from 900 entries, for an EU partnership innovation award (eyeforpharma Barcelona Awards 2016).
8. A copy of the project report entitled A Cross-Sector Joint Working Model to Evaluate and improve Services for People with Epilepsy in the Dumfries and Galloway Health Board will be available from Wednesday evening. For more details and to speak to the case study beforehand (Dumfries and Galloway) please contact:
Allana Parker, public affairs officer on: 0141 427 4911 or 07884 012 147.
9. For comments from UCB Pharma please contact:
Avril O’Connor, brand communications manager, British & Irish Isles:
D + 44 (0)1753 777197, M:+ 44 (0)7736 120044 E: Avril.OConnor@ucb.com
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