Nothing comes for free?

A blog piece from one of our partners, Andrew Lindsay at Epilepsy Scotland
Published in Standalone projects on 22 Mar 2024

This post is written by Andrew Lindsay (Policy and Communications Manager, Epilepsy Scotland)

Iriss has been working with a collaborative of organisations supporting people with epilepsy. The support from these organisations complements, supplements and augments the much needed health interventions from clinical staff, that people with epilepsy need. We know that whole person support needs to include both social, and medical interventions. Together, they provide what is needed for people with epilepsy to live fully, and to live well. Here, Andrew articulates the clash between the evident need for these social support services, and the funding environment that surrounds them. 

The third sector in Scotland is hurting. According to the Scottish Council of Voluntary Organisations’ (SCVO) latest Scottish Third Sector Tracker 7 in 10 charities cite financial challenges as their biggest challenge, up significantly in just two years. There’s been a 10% increase in the number of organisations cancelling or deferring planned programmes, projects, and services than this time last year. 65% have found it difficult to recruit and retain staff due to funding constraints and the large pay rises in public and private sectors they are competing with. 

This is at a time when statutory services are being cut and are under immense strain. This is no more evident than in the health sector, where health charities are desperately trying to support an ever growing number of people who are finding themselves in crisis with no support and nowhere to turn to other than third sector due to waiting times for statutory care. Many people are using the third sector as a stop gap while they wait for clinical care, and some give up getting clinical care completely due to waiting times and instead get by on social support from health charities.

For Epilepsy Scotland this increase in need is clear, simply by numbers. Our Helpline has seen an unbelievable 125% increase in calls since 2017, and more importantly these calls are getting more and more complex. People in real crisis are getting in touch with acute needs and our Helpline officers are increasingly dealing with serious issues such as people phoning with suicidal thoughts, severe levels of depression and anxiety and are challenged by a level of poverty exacerbating all these. In fact the situation has become so serious our Helpline Team had to adapt a new service just to deal with these new acute cases of crisis; called the Check-In Service. Our Welfare Rights Team have had to close their books to new clients twice in last year due to the overwhelming demand for their services. We also have waiting lists for our Wellbeing Service.   

Charities like Epilepsy Scotland do not provide clinical care. We provide what is called social support. Social support for people with epilepsy focuses on providing a person with resources and knowledge helping them develop skills and confidence to live well and safely with epilepsy and self-manage their condition. This includes services such as information, advice and guidance from a specially trained colleague, peer support meetings and activities, epilepsy self-management courses (delivered online or in person), one-to-one support either face to face or through remote services, and in-person counselling. We have a Youth Group and our Welfare Rights Team who provide vital income maximisation for those living with epilepsy. Our services are person centred and delivered by trained staff who have significant knowledge of epilepsy and its impact and we are the only charity to deliver expert epilepsy social support services across the whole of Scotland. 

The work we do helps save the NHS money. Those who can manage their epilepsy better and get the social support they need will use clinical and social care services less. The work Epilepsy Scotland does also helps the Scottish Government achieve several of its own objectives in its “Neurological care and support: framework for action 2020-2025”  as well as help to contribute towards the objectives of Local Delivery Plans of Local Authorities.

Our services get referrals from clinical and social care partners across Scotland, with many coming from the vital Epilepsy Specialist Nurses (ESN) and neurology departments located across the country. Many are also now coming directly from GPs and Local Authority social services departments. The Scottish Government and NHS both signpost people with epilepsy to our services. These referral pathways are vital for people living with epilepsy to make sure they get the right bespoke, person-centred social support that we can provide to complement the vital clinical care they are receiving, which we cannot provide.

But it seems all statutory partners expect us to provide much of the social support we do for free. 

Most referrals made to us from statutory partners are sent to or signposted to our Helpline. Our Helpline Team are highly trained individuals who not only have first class knowledge of epilepsy and the support available for people living with the condition, but they also have to be fully and continuously trained in supporting people in acute crisis, including those with severe depression, anxiety and suicidal ideation. The Helpline is also the gateway to all other social support services. Many ESNs and clinical partners have noted how vital the Helpline is for them to be able to refer people to get that extra support.

Yet, despite the NHS, Local Authorities, and Scottish Government all referring or signposting people to our Helpline, we have not received 1 penny in over 10 years from any statutory partner to help run this service. 

In the spirit of fairness, it must be said that Scottish Government money has funded Epilepsy Scotland over the last few years to deliver our Youth Work service and specific projects. But these are always new projects that require extra resources and capacity to deliver. Other than the Youth Work service, they have not funded simple delivery of our key social support services which we are already providing.

Whenever we do have conversations with local/national government or NHS about funding options for service delivery, statutory partners usually note that they do not wish to fund service delivery as it is “unsustainable”. They are not wrong. Without government or NHS backing many of our support services are unsustainable. Fundraising has become more and more challenging as the cost of living crisis continues. Corporate donations are getting lower, and more and more organisations are vying for a slice of a now even smaller pie from independent grant funders. Voluntary donations have dropped, and smaller budgets in organisations mean training income has fallen off a cliff. All the while the costs of delivering our services have skyrocketed. This means without legacy donations our services are simply unsustainable to deliver at current levels, never mind increasing them to meet growing demand.

Governments and NHS have all but abandoned the third sector health charities by passing on the unsustainability of delivering those services to them. With the right financial support from governments and NHS, vital social support services would not be unsustainable for the third sector health charities that deliver them. Instead, the burden would be passed on to statutory bodies that already invest billions every year on services such as social care and clinical care which are, by definition, unsustainable.   

It is my belief, despite the way local/national governments and NHS act, that nothing comes for free in life. With the economic landscape we now find ourselves in, we cannot continue to operate as we have in the past. Our social services cannot be fully funded independently anymore and therefore cannot be offered for free anymore to those bodies who refer people to us. It is time Scottish Government, Local Authorities, and health boards recognise the vital importance of social support services delivered by health charities, which very often help deliver their own local and national policies and plans. It is time they recognise they cannot keep expecting those services to be delivered for free. Its time they all look behind their infamous money couches and find the funding necessary to contribute a fair share towards the delivery of current vital social support services in Scotland… and the time to do it, is now.