In 2018 Livewell Southwest, the private company who run mental health services in Plymouth, stopped ALL assessments for adult ADHD and autism. There was no announcement, and the Devon Clinical Commissioning Group helped to cover it up – ignoring questions and refusing Freedom of Information requests. However, in October last year, we finally beat them! The NHS agreed to put an extra £500,000 into the service and we soon heard from people on their waiting list who had been offered assessments. This is a write-up of my involvement in the campaign…
The first step, as with any community campaign, was research. I’d heard rumours that the service didn’t really exist, but we needed proof of what was happening in order to be able to organise. This was the part of the campaign which took the longest – emails were ignored, and Freedom of Information questions dodged. Eventually I was able to confirm the situation by finding other people who had asked for an assessment and been told the service wasn’t really there.
The next step was to organise a campaign. After getting advice from friends in Bristol who had stopped Virgin from taking over children’s mental health services in Bristol, I set about getting a group together. Just like the research this took a lot of persistence but in the end we had about 10 people involved in an organising committee that met on Zoom and the chat app Discord. Contacting local disabled people’s organisations helped, but most of the numbers came from a university students’ group and word of mouth.
This group sent Devon CCG (now One Devon ICB) a list of demands, and managed to get on the local radio to talk about it. We also got Plymouth Unison branch to share our demands on their website which I think was a big help. Basically, we did everything we could to connect with allies who could help fight this (like mapping a workplace, but applied to the community!). We didn’t expect to get all our demands met. It was a deliberate tactic to say what we really wanted and ask for the earth, allowing them to think they had bargained us down when it came to negotiations.
Our list of demands:
- A waiting time for assessments of adults with autism or ADHD of 2-3 months. Until that target is reached, patients should be given the option of referral to another service outside the area or through the patient choice scheme
- Any diagnostic service for autism or ADHD should be provided by the NHS, NOT contracted out to Livewell Southwest or any other private company
- For the NHS in Devon to commit to a strategy for raising awareness among medical professionals regarding:
- The under-diagnosis of autism and ADHD in many sections of the population based on gender, class, race and ethnicity
- The less well-known presentations of autism and ADHD (for example, inattentive symptoms of ADHD)
- Common co-morbidities and how they may mask symptoms of autism and ADHD in patients (for example, how autism is often missed in patients with other disabilities, or how ADHD is extremely common in patients already diagnosed with Tourettes Syndrome)
Eventually the CCG agreed to meet with us. The CCG (now One Devon Integrated Care Board) is the local body that makes decisions about who provides NHS services and how much money they get. We ran our meeting with the CCG the same way we would have had a meeting with the boss in workplace organising – for example, making sure we all spoke so there was no one person to pick on. This pressure from media attention, union support, and a grassroots group that was clearly not going away, won the day. We had plans to escalate to direct action but in the end that wasn’t needed. Assessments have started again and they agreed to put £500,000 more a year into the service.
Some of our demands weren’t met (running it as an NHS service). Also some of them were agreed to in theory (making GPs better informed) but we haven’t had the energy as a group to follow up and make them happen. I think winning the main demand too fast meant that there wasn’t time to get used to acting together as an organising committee, and also meant few other people knew about the campaign, as we hadn’t called for any action from the public. I don’t know what lessons to draw from that! But friends are already reporting that they have appointments with the new service, so all in all it was a good thing.
After several NHS community organising campaigns in the South West it seems like the following are key to a successful campaign:
- Combine community and worker organising (and do it as a group so they can’t identify “ringleaders” to sack)
- Persistence is key – show them you aren’t going away. The kind of action we take is less important than just showing you can keep it up day-in-day-out until you win
- Escalate, but slowly. Show that you’re willing to take things further (eg direct action), but build up to it a bit at a time. Examples we’ve tried or planned in the South West include: getting supporters to email the ICB all on the same day to fill up their inboxes, disrupting community consultations, disrupting ICB meetings with noise demos or even storming their building during a protest!
The campaign group has now become more of a support group for the people involved, which is no bad thing. You can reach us on devonassessmentcampaign at riseup dot net if you need to get in touch!