As National Epilepsy Week draws to a close, our Chief Executive, Lesslie Young, looks towards the future and how we must ensure services and support are provided in a way which best meets the needs of people with epilepsy.

As we approach the end of National Epilepsy Week, I want to take the time to look towards the future.

As our campaign has shown, COVID-19 has significantly impacted people with epilepsy.

Cancelled appointments, loss of support, increased seizures, greater and more widespread isolation as well as deteriorating mental health has significantly increased the need for support.

Now is the time to look beyond Covid, use the evidence gathered, which is there in abundance, and act to ensure services and support is provided in a way which best meets the needs of people with epilepsy.

The three pillars of healthcare

Our healthcare system comprises three pillars – clinical care, social care and third sector support. All of equal value.

Clinical services have understandably been working under sustained pressure because of the pandemic.

Many clinical staff, including Epilepsy Specialist Nurses, were redeployed to provide Covid care.

In some areas this was necessary and unavoidable. However, prioritising the needs of Covid patients saw the needs of others unmet, and they have remained so for a significant period of time.

This has not only increased waiting times but also put further pressure on already stretched clinical services.

Investment in Epilepsy Specialist Nurses is crucial, they are key in the support of people with epilepsy, helping them to manage their condition and reduce pressure on other areas of the NHS e.g. A&E and neurology.

Social care

Social care works in tandem with the NHS. However, it is too frequently not treated as an equal or valued partner.

Social care supports people to live in the community, based on a programme to meet their individual needs and aspirations.

Properly assessed, organised, and funded social care has the potential to significantly change and improve the lives of people living with long term conditions.

However, the pandemic has shone the spotlight on a truth we have known for far too long – social care is viewed as a second-class service compared to the NHS, and it is the people who live with long term conditions who suffer.

I firmly believe a National Care Service, as outlined in the Feeley report, has the potential to revolutionise care in Scotland for the better. Social care must be consistent across local authorities and must be free at the point of use, as with the NHS.

Those who work in social care must be remunerated at a level which reflects their work and responsibility, much higher than what is presently offered.

Third sector

Finally, third sector colleagues. Those who work in the third or not for profit sector are as vital to those with long-term conditions as are those who work in the NHS and social care.

The third sector provides tailored information and support to various sections of society.

In Epilepsy Scotland’s case, we aim to provide as much support as possible to people affected by epilepsy.

Whether accessing support through our Wellbeing Service, Welfare Rights, Helpline, or any other support we can evidence the work we do supporting people living with and affected by epilepsy not only improves their quality of life but reduces the demand on statutory services.

We, and our third sector colleagues, must be treated as an equal partner in the provision of health and social care.

Our work must be recognised and funded accordingly to ensure the work and effort of the NHS and social care results in the best outcome for the person living with a long-term health condition.

Not to do so would be an abrogation of responsibility.

Change must happen now

COVID-19 has presented challenge, brought a great deal of heartache for far too many and sadly for many, some of it unnecessarily so.

We cannot change what has happened, but we must learn from it.

Change, real, meaningful change has to happen now. There is no place for endless, time consuming, time wasting meetings regurgitating the information and evidence we already have, some of which we have had for decades.

We need bold decisive action to create a workable health and social care system that truly meets the needs of everyone.