Information about non epileptic seizures and Non Epileptic Attack Disorder.

Neurology Third Sector Engagement Day

By on 18 September 2015 in News

Our group was invited to attend this event which was held in Stirling in Scotland. Our representative, Sue Downie, tells us how it went.

The day was aimed at Third Sector representatives working to improve services and outcomes for people with lived experience of neurological conditions. Professor Craig White (Divisional Clinical Lead, Healthcare Quality and Strategy Directorate, Scottish Government) was in the chair.

Given the aim of the Scottish Government for transparency, he welcomed us in a bid to hear the experiences of third sector organisations; what is working, what doesn’t work and finally what could be put in place to help. With emphasis on the importance of giving all carers and those who are cared for a say, he insisted that all voices are heard. The Scottish Government is reviewing all health areas and is looking to fund greater training.

Joanna Swanson, who is head of the Person-Centred Team in the Scottish Government, informed us that the team has policy responsibility for person-centred care and self-management, the NHS complaints procedure and the developing stronger voice framework. Again the emphasis on patients having a voice!
Another speaker, Irene Oldfather, talked about the desire for each individual to have a voice in their treatment and care. You can read more about this here. It was acknowledged that those organisations that provide support are under pressure as people are becoming more involved in decisions about their own care and given that looking after people in a safe, caring and respectful way is core to services in Scotland.

Third Sector organisations in attendance included FND Hope (Functional Neurological Disorder), Epilepsy Scotland, Epilepsy Connections, Quarriers (epilepsy), SUDEP (Sudden Unexpected Death through Epilepsy), Motor Neuron Disease Scotland, BOBATH (Cerebral Palsy Centre), Parkinsons, MS Society, Ayrshire Hospice, CHSS Chest, Heart and Stroke Scotland, CHAS (Children’s Hospice Association Scotland), NNAG (National Neurological Advisory Group), Action for ME and there were many attendees from within NHS. Then of course there was myself. Whilst we are not yet a third sector organisation, I represented us patients who suffer from Non-epileptic Attack Disorder (NEAD) which is a neurological disorder as opposed to a neurological disease.

The day involved asking delegates:

  • What support do we need in Scotland to live healthier lives?
  • What areas of health and social care matter most to us?
  • Thinking about the future of health and social car services, where should our focus be?

Some examples of  third sector improvement in practice that were discussed are :

The Children’s Hospice Association Scotland (CHAS) reported that, in keeping with the directive, their work very much involved client input with a wholly person-centred approach. They described their method of visiting and re-visiting what works and what is not working by asking the clients themselves – a “what matters to me conversation” -then tailoring ‘best fit’ actions around that individual. This methodology was considered to be a great improvement to patient experience.

Chest Heart and Stroke Scotland (CHSS) conveyed that with chronic obstructive pulmonary disease (COPD) mortality rates were at 66.31 for males and 50.4 for females in 2013 (Public Health information for Scotland); that cardiovascular disease accounts for 38% of deaths in Scotland and the fact that stroke remains the third commonest cause of death and is a leading cause of disability. The downturn in people who smoke has seen an improvement in figures though access to recreational facilities is patchy and inconsistent (i.e. swimming, rehabilitation, exercise). They stated that inactivity causes twice as many deaths as obesity throughout Europe and their desire is to be able to offer these exercise facilities for those both suffering and at risk of these conditions. They offer free workshops and ongoing support to provide the knowledge, skills and confidence to work with the health and social care services to help plan new and better services; again striving to a person-centred treatment approach.
The final speaker (and the one that spoke of issues closest to our hearts) was from The William Quarrier Scottish Epilepsy Centre. The centre provides the only residential assessment and treatment centre in Scotland for adults with epilepsy and it aims to increase understanding of the needs of patients with epilepsy through research. It is also where many people from Scotland and Northern Ireland receive their diagnosis of NEAD following video telemetry.The centre has proven to be a great success since its opening on 12th April 2013. Patients are admitted for 24 hour monitoring for a few weeks, dependent on their individual needs, and are assessed on an individual basis. Tests include EEG (Electroencephalography) and video telemetry (video monitoring and EEG together) which provides information about your seizures. Also additional monitoring through CCTV and video cameras support the assessment visually. There is an emphasis on liaising with relatives and carers who have seen events. They can then watch back the videos to report if seizure activity is as it was when they witnessed previous episodes. The ‘named nurse’ approach ensures that all patients have continuum in their care throughout their stay; another successful person-centred approach. It was reported that those patients diagnosed with NEAD tended not to visit health services as much once they were correctly diagnosed.

The afternoon consisted of all the delegates offering their experiences of what works, what doesn’t and what would be a best fit for each unique organisation. The day proved to be informative and useful in the sense that it highlighted even more the requirement for an organisation for those who suffer from NEAD. With the government reviewing all health areas and looking to fund greater training, I would suggest that this would be the ideal time to get charitable status for a NEAD organisation in order that we can get out there and educate the public (including front line medical staff) about our neurological disorder AND in, best case scenario, be able to help individuals in the most person-centred way possible; as the organisations in attendance strive to do. We do require such an organisation to help identify and assist those who suffer from this debilitating and invisible disorder; our patients need hope for the future.
Further reading on
www.healthier.scot

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