Meeting the need

“Charities underpin the country’s social infrastructure,” suggested the National Council for Voluntary Organisations (NCVO) ahead of the General Election: “they deliver public services. They meet needs, connect communities and individuals, and help address systemic inequality.”

The charity sector has been facing challenges in recent years, with the NCVO highlighting “high and growing demand” paired with spiralling costs, at a time when resources are “shrinking,” in what it has termed a Cost of Giving Crisis.

NCVO, the membership body of charities, voluntary organisations, and community groups in England, has been calling for more support for voluntary organisations.

Following the 4 July election, Sarah Elliott, chief executive of NCVO, wrote in an open letter to the new Prime Minister, Sir Keir Starmer, emphasising that: “Charities have never been more needed.”

“We need refreshed energy and investment to demonstrate your commitment to us,” Elliott added, outlining the asks of the Voluntary Sector Manifesto, which includes ensuring all voices are heard, support for a thriving charity sector, and changes to make public giving easier.

A survey by NPC, a think tank for the social sector, indicated that only one quarter of contracts that charities hold have been uplifted in line with inflation.

The consultancy recommended a renewed partnership between government and the voluntary sector and targeted programmes to ensure charities can provide support in the areas with the most need.

In November 2023, NCVO delivered a letter to the-then Chancellor of the Exchequer, Jeremy Hunt, co-signed by more than 1400 charities and voluntary organisations, calling for urgent action to address “chronic underfunding” of public services delivered by charities.

To find out more about the challenges facing charities and voluntary organisations, OT spoke with representatives from SeeAbility and The Partially Sighted Society, two organisations that were among the signatories of the NCVO’s open letter.

The costs of campaigning

SeeAbility supports people with learning disabilities, autism and sight loss and this year is celebrating its 225^th anniversary. Its fundraised programmes include initiatives around disability inclusion, advocacy, and supported employment, and is known for its work on eye care.

The eye care team at SeeAbility is organised into three areas, with one section focused on public health awareness for learning disability eye care.

Through this arm of the organisation, the charity produces its suite of easy-read eye care resources – an activity delivered through fundraising.

The charity has also employed Eye Care Champions who have lived experiences of learning disability and/or sight loss, positions made possible by an initial three-year lottery grant and maintained by funding from trusts and foundations.

One of SeeAbility’s latest projects provides free Oliver McGowan training on learning disability and autism for the optical sector, with support from the Thomas Pocklington Trust.

Oliver McGowan training is mandatory for Care Quality Commission regulated health and care providers, but as optical professionals are regulated by the General Optical Council, SeeAbility has sought to provide the free training to support eye care practitioners in meeting the needs of patients with autism and learning disabilities.

Lisa Donaldson, head of eye care and vision at SeeAbility, explained: “Our public health campaigning, the eye care champions, and the website, are dependent on trusts and foundations or unrestricted giving.”

We’ve got the patient, and more broadly as an organisation, the people we support, at the heart of everything. Ultimately, we support people to live their best lives

Eye care in special schools

Another key focus for SeeAbility is the Special Schools Eye Care Service. The service was developed from the Children in Focus campaign by SeeAbility, which highlighted the inequalities in eye care experienced by children with learning disabilities, particularly in special schools.

In June 2023, it was confirmed that the NHS England Special Schools Eye Care Service would be expanded from April 2024. This was followed by a consultation in autumn centred on the specification of the service.

At the time of writing, the sector is awaiting news on the future delivery of the Special Schools Eye Care Service, with uncertainty regarding the long-term service specification. Read more about the impact of the service, and views on the existing specification, here.

“Children in Focus was charitably funded for six years. We had six years of campaigning and being reliant on charitable income to run a service in schools,” Donaldson shared.

“The challenge is, if the NHS fee doesn’t allow us to deliver the service that we want to be able to deliver – the service that the children need – and that the framework and all the work that has gone in before requires, then we can’t cross-fund it,” she explained. “It would be a very hard thing to fundraise for now because it’s not a campaign anymore.”

The proof-of-concept for the service was evaluated positively, Donaldson shared, but the proposals to change it “are more significant than a few tweaks.”

“What really concerns us is that the fee will be reduced to match those changes, which will reduce the quality, and it would then be a service that doesn’t meet the children’s needs,” she explained.

The potential effect of poorer quality services would be referring a “significant number” of children into secondary care, which then impacts paediatric ophthalmology departments.

Above and beyond

SeeAbility is also a social care provider in the South East of England and hosts a unit of specialist vision rehabilitation workers within the eye care team who are supported by social care funding.

People with learning disabilities are 10 times more likely to experience serious sight problems and Donaldson shared that very specialist eye care and support is required to help individuals with learning disabilities to gain the most from their vision.

As the role of the vision rehabilitation team is very specialist, “it’s not something that, necessarily, we get funding for from local authorities when people get packages of care. It’s another thing we do that is over and above,” Donaldson said.

Moving its fundraising focus away from the campaign means the charity can look towards other activities.

“There are lots of priorities as a social care organisation,” Donaldson said. “We want to be able to fundraise for other things, because there are lots of things that need to be better for people with learning disabilities.”

When talking to OT about the ‘cost of giving’ crisis and why SeeAbility co-signed the NCVO open letter, Donaldson emphasised: “I think people do get confused that you can be both a provider of services and also a charity. The key thing to understand is that we are not-for-profit – we do have the best interest of the patient group that we are representing at heart.”

The organisation works hard to campaign in the sector for its patient group, she explained: “It’s about giving people with learning disability a voice. Our work in schools ties in with that, because if you get it right for kids, then you’re optimising their future chances and breaking down barriers for them.”

She concluded: “We’ve got the patient, and more broadly as an organisation, the people we support, at the heart of everything. Ultimately, we support people to live their best lives.”

“After 225 years, we’ve achieved so much, but there’s a long way to go and we are looking forward to another 225 years through our programmes of work. If people would like to find out more, please take a look at our website,” Donaldson said.

After 225 years, we’ve achieved so much, but there’s a long way to go and we are looking forward to another 225 years through our programmes of work

Supporting individuals with sight loss

The Partially Sighted Society is a national charity based in Doncaster, South Yorkshire, that takes a holistic approach to supporting individuals with sight loss.

Anita Plant, chief executive officer of the charity, explained: “We are all really passionate about helping people live with sight loss after diagnosis, looking at the vision that is left and what can be done to help the individual make the best use of that.”

The small team includes Plant, whose background is in vision rehabilitation, and optometrist, Gary Flack, along with a mental health and wellbeing practitioner.

The charity provides low vision sight test assessments and support for sight loss, along with holistic support in the form of social groups and technical support, and also runs a school printing programme.

The activities are offered free of charge, and The Partially Sighted Society is not contracted to deliver the services.

“We don’t get any funding from anywhere, we are entirely reliant on our own fundraising initiatives, legacies and donations, and it has been really difficult,” explained Plant.

Flack explained that the charity has welcomed people from all over the country, and further afield.

He said: “We take phone calls often from people reaching out where the hospitals don’t have the time to sit with them, and so they are left to go home and live with it. Sometimes we are the last people they try. I think the furthest away we’ve seen someone from is South Africa. The individual had family in the UK who knew about us and brought them up to see us.”

We don’t get any funding from anywhere, we are entirely reliant on our own fundraising initiatives, legacies and donations, and it has been really difficult

Growing demand on charity services

As a smaller organisation, the charity was drawn to support the NCVO’s campaign and open letter, recognising the ripple effects of financial challenges across the charity sector.

“One of the issues for us is that, with the cuts in public services, people have fewer places to go and that is when it falls on the charity doorstep. That is not a problem, but we don’t receive any funding for that,” Plant shared.

“As charities you are expected to give and give, and try to drum up the funds from a very small pot, which is getting even smaller with the cost-of-living crisis,” she added.

Flack noted that, if donations shrink, the charity is not large enough to campaign in the same way that major organisations can.

He added: “We think of ourselves as more at the coalface, working directly with patients. It’s harder to come up with ideas – you can only fundraise from the people that come here so much, they haven’t got the money to give and so it will get harder.”

Contextualising this, Plant shared that 89% of every pound fundraised goes directly into The Partially Sighted Society’s services.

“Most of our income has come from legacies in the past, and that comes from direct engagement with people from the services that we deliver,” she said.

“It is really difficult,” Plant acknowledged. “We don’t get any statutory funding, but we are picking up the slack in services – we won’t turn anyone away.”

The impact of support from the corporate sector

Support from Heidelberg Engineering has made a significant difference for The Partially Sighted Society, the team explained.

The charity had decided to purchase a new optical coherence tomography (OCT) machine using a legacy donation. Tosh Vadhia, managing director of Heidelberg Engineering, toured the organisation’s facilities and opted to donate the device instead. He has since gone on to join the charity’s board as a trustee.

“That was really lovely and a direct way that the corporate sector can support us and support people with sight loss,” Plant shared.

The OCT makes a significant difference, Flack said: “If you don’t intervene early enough after diagnosis, it becomes a bigger problem and all the other health issues become bigger problems because people stop engaging.

“We need to reach people as soon as possible after diagnosis and give them the facts – that there is life after a visual impairment diagnosis. It may be different, but there is life, and it can be a good one,” the team shared.

We need to reach people as soon as possible after diagnosis and give them the facts – that there is life after a visual impairment diagnosis

“Don’t leave people in limbo”

For The Partially Sighted Society, its key message for optometrists is to keep seeking out education on supporting patients with sight loss.

Most importantly, Plant said, look out for local services and support: “Don’t leave people in limbo.”

“We are an ageing population – the main cause of sight loss in the UK is age-related macular degeneration – there are going to be more of these patients. See where you can send people, and if you don’t know, ask,” she added.

The Partially Sighted Society encouraged practices, individuals, or companies interested in supporting a charity to get in touch.

“It’s really important for us as a charity, because people tend to focus on the big names,” Plant shared. “We have some fantastic fundraising ideas.”