There are a few things I’d like to write about IAPT LTC work, this week is just an introduction. I’ll write a post specifically about pain and another about fatigue in the next few weeks. I’ve specialised in this area of work so I’ve got a perspective on it, but if you work in an LTC site/team/have an interest in this part of our work, and want to say anything about it, then give me a shout. It would be really good to hear about other teams and the work everyone is doing.
What is IAPT LTC?
IAPT LTC can’t cure physical health conditions. I’m saying that here because there has been some confusion. We are still IAPT; we offer evidence based psychological therapy for depression and anxiety. What IAPT LTC does differently is acknowledge the context and impact of physical health, and the additional psychological processes that are often going on around that. IAPT LTC has practitioners who are informed about specific physical health conditions and symptoms, and who are confident to adapt their work in response to those.
People with long term physical health problems are often told that they’ve got to ‘accept’ it, or ‘live with it’, but they aren’t told how to do that. An IAPT LTC team might be able to help someone into the journey of acceptance (a very loaded word) and equip them with some skills to help them to ‘live with it’.
From the IAPT side, my experience of all of this has been scary, powerful and positive, and that’s also the feedback from the patients that we’ve seen.
What’s in a name (again)
A “quick” note here about language. IAPT really does have a language problem (I started this blog with two posts about that): too much jargon, too wordy, too medicalised, too academic. In the area of LTC (which means long term physical health condition btw) I’m going to follow common practice from my team. We have stopped talking about medically unexplained symptoms (MUS), which you’ll find all over the literature; we talk about persistent physical symptoms (PPS) instead. We start by acknowledging the reality of what the person is experiencing in their body instead of doubting and blaming them because medical science hasn’t caught up with what’s happening to them.
Sorry, rant over. Lets crack on with a case study:
In 2007 a woman in her 20s was recovering from a severe relapse of Chronic Fatigue Syndrome (the second serious relapse since she was diagnosed with CFS at the age of 13). She’d had about 3 years of restricted activity, for the first few months of the relapse it was a struggle to do more than have a bath (standing for a shower took too much out of her). She’d had to drop out of a degree course and had switched to a BA course with the Open University that she could study in short blocks while lying down. She was living on benefits with symptoms of severe social anxiety and depression on top of the CFS.
She gradually progressed to the point where she felt well enough to think about work; she’d started to socialise a bit more and she’d always hoped to do meaningful work one day. She wasn’t sure what sort of work she could do or what would happen if she became ill again, she wasn’t sure how to find and apply for a job. She felt guilty about claiming benefits so she went to the Jobcenter and told an advisor that she was getting sickness benefits but was starting to feel better, could anyone help her to find a job?
Carol, the advisor, gave her a leaflet about a programme that was being run by the NHS in collaboration with the Jobcenter. It was called the Condition Management Programme. Carol referred her to this. She had an hour-long person centered assessment at the Jobcenter with a nurse called Diane, then went on a seven week low intensity psychoeducation course that was delivered by a physiotherapist called Bardy and an assistant psychologist called Vicky. The course introduced her to the five areas model, covered Behavioural Activation, Cognitive Restructuring, medication management, education on anxiety and the Fight/Flight response, relaxation skills, goal setting and problem solving. It regularly put her in a room with other people who had shared experiences. They received a Chris Williams booklet every week and lunch was provided. Everyone who went on the course was given a free pass for three moths of access to local leisure centres.
When the programme finished she became a volunteer with them – sitting in on other courses and delivering a couple of the slides, supporting the group to fill in their questionnaires, getting to know the rest of the team who ran the programme. They were mostly occupational therapists with a few general and mental health nurses, a couple of assistant psychologists, and some physiotherapists who ran a pain management group. She became a support worker with them, then a senior support worker. Co-facilitating those courses and supporting them from the office became her first proper job. This introduction to a holistic approach to patient care (the OTs really set the tone) and emphasis on integrated working with other teams made a big impression.
In 2010, in the third wave of IAPT recruitment, she applied to train as a Psychological Wellbeing Practitioner and was successful. Two weeks later the Condition Management Programme lost its funding (IAPT was cheaper) and that service vanished.
In 2014, now a qualified Low Intensity Therapist (LIT, otherwise known as a PWP) and supervisor, she heard rumours that IAPT was going to expand to offer support for people with Long-Term Health Conditions (LTC) and Medically Unexplained Symptoms (MUS). She approached a manager and asked to be involved. As part of a team of LITs and clinical psychologists she worked for years, and through another crippling relapse of CFS, to develop psychoeducation courses for people with long term pain and other LTCs. She now works at Step 2 in a big IAPT LTC team, and blogs about Low Intensity work for a hobby (hint: she’s me).
Is there a place for low intensity interventions for people with LTC and PPS? Oh, Hells yes! ‘In the face of complexity go simple’ isn’t just a convenient phrase, its life changing when you do it well.
Like everything else in IAPT the argument for IAPT LTC was built on numbers. 40% of the people who have got depression and anxiety have also got an LTC , 30% of people with an LTC are thought to have depression and anxiety. People who experience Persistent Physical Symptoms have got a 70% chance of being depressed or anxious.
Obviously there’s an economic cost to all of this or IAPT wouldn’t be involved. People who are depressed and anxious are less able to follow advice about the management of their physical symptoms. They are more likely to make unplanned use of healthcare services and might not manage lifestyle factors like diet and activity which can also add to the healthcare costs of managing their LTC/PPS. Getting IAPT to treat depression and anxiety in the context of physical health conditions is supposed to save the NHS millions every year. An IAPT expansion was launched on the back of the publication of the Five Year Forward report. More IAPT staff were to be recruited and trained on LTC top-up courses to work specifically with patients who have got a range of LTC and PPS. Integration was at the heart of this expansion; the idea is for IAPT LTC to be embedded in physical care pathways.
Back to integration
People often feel like they are cut into pieces by healthcare services. They are passed from person to person, travel from one new and awful setting to another. Everywhere they go the professional that they’re talking to is time-limited and focused strictly on one part of their experience. It’s exhausting. So many people in the physical health professions don’t see the psychological side as any of their business.
On one Pain course that I facilitated a lady sat, looking utterly bewildered and sad; we were talking about the social and psychological impact of pain and she said ‘when it all gets too much I go to my doctor, but every time I go she just gives me a new tablet. It’s as if all she sees is my knee. I’m on seven tablets now and she has never asked how I feel about having to take all of these every day.’ The hopelessness in her voice broke my heart.
What’s in the way?
Joining services up is essential; I’ve already talked about that. There are huge barriers in the way of integration. Organisational stuff, like how funding is managed and how there is a historical division between mental and physical health; rooms are hard to come by, and to work into an NHS team of any type you have to jump through tiny flaming hoops around mandatory training, honorary and substantial contracts, record keeping systems and activity targets and reporting. There are cultural barriers too; outdated hierarchies, territorial attitudes, the fact that some professions don’t see the relevance of psychological input.
Back in 2014 I got very excited about our ‘pain course’. I had a clinical room next door to a physiotherapist and (based on my experience of the physios in the Condition Management Programme) I thought she’d be excited about it too.
NaG: I just wanted to let you know that we’ve started running a course for people who have got long term pain.
Physio: What do you mean?
NaG: Well, we know that people who are in pain for a long time can feel quite sad and anxious sometimes, so we’ve written a course to help them with that side of things. I thought it might be useful for some of your patients?
Physio (looking cross and a bit panicked): No, I don’t know anything about that, we’ve got a team for that.
She shut the door in my face.
NaG (subvocal while walking away): Wow
It’s OK to talk about emotion
The advent of LTC work has been refreshing for LITs who have been in the role for a few years. The LTC developpment was the first time in my IAPT life when I was given permission to talk specifically about emotion. There was so much anger, grief, guilt and shame in the room with us on those courses and in one to one work that we had to start talking about it directly. We had to develop a way of talking about compassion and acceptance, because if you don’t talk about those things then no one wants to hear anything else that you might suggest. We got to learn about mindfulness and how powerful it can be as an approach to the body, heart and mind (although not a cure-all and there are some issues). We had to learn how to facilitate new challenges in group and one to one settings. The LTC work is a genuine expansion of our clinical skill set.
Drift? Evidence base? I’ll get to that in the next posts.
Feel the fear…
LTC work can be scary. The first time I facilitated a pain course I opened the door to welcome the patients and saw a phalanx of people progress slowly down the corridor towards me. They were limping, a couple of them were rubbing painful parts of their body, one person was in a wheelchair, a couple of them were using walking sticks and frames, others were leaning on the wall for support. None of them looked happy. I froze. What on earth had I got to offer in the face of this? What could we possibly do to help?
As it turns out, loads.
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