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What price Sanctuary?

by Fay Selvan and Nicky Lidbetter, Big Life Director of Mental Health.

Big Life’s charity, Self Help, has been delivering mental health services since 1995, when we ran our first peer-led self-help group for people experiencing anxiety and depression. Since then we have grown massively, first by expanding the number of peer-led self-help groups and then delivering structured training courses to help people develop the tools to help themselves.

With the emergence of online Cognitive Behavioural Therapies (CBT), we were one of the early adopters, working with developers to widen access. We soon realised that the best recovery comes from services that offer some personal interaction, either in person at a trusted and non-stigmatising community centre, or over the telephone for people who preferred to access from home. We were able to take advantage of NHS investment in talking therapies (through the IAPT programme) to expand our small counselling service to deliver Step 2 and 3 CBT services.

We soon developed a reputation for being quick to mobilise, deliver a quality service and reach people who traditionally didn’t access NHS mental health support. It is interesting that 24 years on, now that IAPT services have become part of the mainstream mental health offer, commissioners are taking more and more back into the traditional NHS providers, but that’s another story.

Today we want to talk about the Sanctuary.

We have always responded to gaps in service provision. This is why we were set up in the first place. Nicky was frustrated at a lack of services to help those with anxiety, so she started working with Big Life to develop a charity that is now Self Help – a £6.7m turnover organisation. After a number of years, we decided we needed to do something about the lack of support for people in crisis (again, something that Nicky had personally experienced some years ago in her own journey with mental health issues), particularly out of hours. Many people were telling us horrific stories of how, in desperation, they contacted emergency services or went to Accident and Emergency, only to be turned away or left feeling worse. At least one person told us how their distress had been interpreted as aggression and they had been tasered and thrown into the back of a police van.

After looking at examples of out-of-hours crisis services across the country, we worked with service users to develop the Sanctuary model. In the summer of 2013, trustees agreed £100k to fund the service for a year, using the Self Help’s reserves, with the idea that if we proved it worked we could get mental health commissioners to fund it going forward. And, after the first year, we were successful in getting it commissioned, expanding the service in 2014 to two other areas and adding a daytime telephone service in 2015.

Sanctuary is, or should we say was, a peer-led crisis service. It provided support from 8pm till 6am, all night, every night of the year. We refurbished a suite of rooms (with donations from retailers) in one of our community centres, to offer a calm and relaxing environment for people to come. It was staffed by two people every night and accessed by people through a telephone call. We worked with the ambulance service, police, transport police and GPs to get them to refer people who were in crisis. We did extensive marketing in train stations, bridges, community centres and shops to spread the word. We used a database to record interactions and trained staff to offer tools and techniques to help people cope with their distressing thoughts and feelings.

It was not a clinical service – this is not what people wanted. They wanted someone to listen to them. Someone to help them cope when they felt they had run out of all other options. The nights can feel very long when you are struggling and alone. Before staff clocked off in the morning, they made sure they had referred people into day services, sent an update to their GPs or posted support materials to anyone who had contacted them.

As with every new service, it didn’t pan out exactly as we thought it would! We had thought most people would want to visit in person, which was an essential element for some people, but many more wanted the telephone support and to know that someone was there should they need it. The volunteer peer supporters, we thought we needed to staff the service, were not used. Instead we utilised a small team of dedicated, well trained staff who understood what it was like to be in crisis and have no one to turn to. And it was a great success.

In 2018/19, the Sanctuary delivered over 4,000 support interactions, including 487 visits and 3,573 support calls. Of the people who accessed the service:

• 11% said they would have self-harmed or committed suicide if it wasn’t available
• 18% said they would have gone to Accident and Emergency
• 93% said that after accessing the service their distress rating had reduced.

And don’t just take the data and our word for it. Click here to read Sam’s story and how we helped her overcome suicidal thoughts after she spent seven years struggling to cope, in and out of various mental health services.

With this track record, why has the Sanctuary now been decommissioned?

These are the answers we came up with:

1. As it expanded, it was felt that the service should be commissioned across geographical boundaries and by a lead commissioner. At this point, it became a very small, insignificant service competing with the demands of multi-million pound specialist services for the attention of a pressed commissioner. Partner commissioners, who were not involved in contract reviews, questioned the value of the service when they were asked to contribute financially, and didn’t see how it fit into their local crisis care pathways. No one commissioner felt the service was their responsibility.
2. The efficacy of the service started being questioned by clinicians. Although this was never meant to be a clinical service, it started to be assessed through a clinical lens. As usual a peer-led social model was devalued, even though it was what people asked for.
3. The Sanctuary grew mainly from self-referrals and, despite lots of good will, we struggled to get the emergency services (police and ambulance) to build Sanctuary into their crisis care pathways. Some expressed concern that their duty of care meant that it was too risky to take people in crisis to a non-clinical service.
4. Clinicians and commissioners wanted the service delivered alongside NHS emergency services, so that they could manage risk and the care pathway. As a result, one service moved into an NHS facility, undermining the model of the Sanctuary as a relaxing and nurturing environment away from the busy and often challenging, A&E environment. In fact, there was a real change in the crisis landscape so that rather than services being physically positioned away from A&E and A&E diversion being key, co-location of crisis services in the A&E department more recently has been supported – a trend seen across the country.
5. Despite an independent evaluation of the service by New Economy in 2015, which showed that Return on Investment for the Sanctuary was £1.78 for every £1 invested, the service was not seen as value for money by commissioners. The rising demands on Accident and Emergency departments and the continual breach of national waiting time targets, made the reduction on A&E demand the commissioners’ only priority.

As ever, when one of our services ends, we try and celebrate what we have achieved for the people who have used it, and thank the many people who have made it happen. Whether it be the service users who helped us design it, our Trustees who took the first leap of faith, or the staff who worked tirelessly to deliver it – everyone played a part.

But the main purpose of this blog is to raise some questions about how we see the future of our health and wellbeing services and what drives them. At Big Life, the driver will always be the people who use the service. We will collect data, measure effectiveness and strive to ensure that people have access to the latest most efficient tools and techniques to manage their lives. But we believe people always need to be in control of their own lives and choices. If the only option they have is a clinical NHS service, then that is not a choice. We also believe that we need to use a social model that values the experience and wishes of people as much as what a trained professional would say is right for them. Services need to recognise that people may be struggling with a range of issues at the same time, value them as people and recognise what they have to offer.

Sanctuary hasn’t been decommissioned because there wasn’t enough money, although we are sure financial pressures haven’t helped. It was decommissioned because, as a society, we do not value non-medical interventions. Until this changes, a service user’s experience will always come second to the clinical view, which will continue to disempower and disable people.