When people heard that I was being supported by the Community Rehabilitation Service their immediate thought was often that it was a programme for withdrawing from drugs or alcohol. People often associate the word ‘rehabilitation’ with withdrawal from substances. In this case though the Community Rehabilitation team are a mental health team who describe themselves as the following ‘The Community Rehabilitation Service supports people living with complex mental health problems to achieve their goals and gain the skills and confidence to live as independently as possible.’
Before Community Rehabilitation
Before I was placed under the Community Rehabilitation team I was supported by the Community Mental Health Team (the ‘recovery team’). I didn’t feel like I was making much of a recovery though. It felt like a holding space, meeting someone every other week to talk about what was difficult and to vaguely discuss solutions that I struggled to follow through. If I needed support out of hours I could phone the ‘duty team’. My experience of calling the team in deep distress was that they would often just say my care coordinator would call me when they were back in work. I didn’t feel supported. I read about the Community Rehabilitation team on the internet and tried to self refer, at first I was told they didn’t accept self referrals. When my community team did refer me the rehab team weren’t sure they could support me. I have an eating disorder and this diagnosis seems to fall outside of general rehab or day patient support outside of eating disorders. My diagnosis had become me and I’d lost a lot of confidence in what I could do, I’d become disconnected from friends, family, my relationship and I’d had to leave my employment.
The team did decide to accept me in the end and I stumbled out of a really difficult hospital admission into their care. I still remember the kindness my Community Nurse showed me when she visited me initially in hospital. I was in so much distress and the first thing she did was to show empathy and validate that.
Community Rehab experience
My experience of the service was not necessarily a ‘normal’ one as Covid happened 3 months after I was discharged from hospital into their care. I think it’s probably helpful to describe different areas that they helped me with under headings, I am autistic and I like order to things, so that makes sense to me anyway!
The Community Nurse I was allocated to is a nurse prescriber. This means they can prescribe and advise on medication. This was really helpful to me as I was discharged from hospital with a 10 week dependence on high doses of Lorazepam (a sedative). I had been told by the crisis team and hospital that I could come off the medication within 2 weeks. I now know that this was terrible advice. The Community Nurse stepped in and supported me with gradual withdrawal after I tried to come off the medication far too fast and experienced some pretty horrible withdrawal symptoms. The process took months and their support was essential. At times when I needed prescriptions they would personally drop round the prescription rather than having to have the difficulty of going through everything with the GP. I have experienced mood swings associated with my period for as long as I can remember and also really struggled to recover from my eating disorder due to obsessive thinking. They supported me to discuss a possible diagnosis of PMDD (Pre menstrual dysmorphic disorder) with a psychiatrist and to talk through medication options. I felt informed in deciding to take medication which has helped me with the symptoms that I experienced. They have also supported me in reducing the medication with the view to stopping now I am managing better.
I’ve had weekly contact with my Community Nurse for most of pandemic apart from the first few months in the initial lockdown. I was terrified of catching Covid and passing it to my family so we agreed we would meet outside. They were my lifeline to contact outside of my family when I was really isolated. They met me in all weathers, including in the snow where we sat under blankets! I was utterly terrified to getting near to people due to Covid and they supported me to be able to go to an outdoor café in my local park. Due to this support I am now able to meet family and friends outdoors to use outdoor cafes without being debilitated by anxiety.
In more recent months I have also had support from a different member of the team who is a trained yoga teacher, to do gentle yoga in my garden. I was always a bit cynical about yoga, but it helped me so much. At the time I’d built up a huge fear of my garden, last year there was lots of noise in the community and I became too scared to go into my garden because of noise. Being able to go back into my garden with support helped me to get back to going into it on my own. I found the yoga really relaxing. In the past when I have gained weight it has sent me into a mental health crisis where I have physically hurt myself. Doing the yoga helped me to somehow feel more comfortable in my skin. The Peer Recovery Navigator that taught me was really compassionate and kind which made me feel better about myself. Being able to sit in my garden helped to also break my compulsive relationship with exercise, something eating disorder services have never gotten me to the point of achieving. I can now spend a day sitting around without mentally breaking down. It used to be a huge addiction.
In between my appointments I was able to text, call or email my Community Nurse (within reason!) and also call the duty team. Whoever I spoke to when I called the duty team I felt listened to, supported and understood. They didn’t leave me feeling terrible like the recovery team. I remember on one occasion where I was struggling with low blood sugar, which can be a problem in eating disorder recovery. I couldn’t allow myself to eat anything and I was in danger of becoming really unwell with my symptoms. I called the duty line for support just before 5pm. The person spent time talking me through the anxiety and gently encouraging me to get a drink of orange juice and they stayed on the line whilst I was able to drink it. That small gesture of kindness somehow really shifted my thinking, having my distress validated was so important. I look back to that moment and it felt like a key shift in being able to start properly eating and listening to my body again.
The Community Mental health team I was under previously didn’t offer any group support. Group support isn’t for everyone, but it can be a useful addition to other types of support. The trouble with having an enduring mental illness is that it can, over time, affect your confidence to do things. Lots of mental health teams will signpost, but this misses all the difficulties the person might be having in getting to and sustaining an activity. Community mental health teams are often not that up to date with everything that is happening in the community either as they are too busy fire fighting day to day difficulties to research into local services. The Community Rehab team offer a variety of different supported groups for the people under their service. These include an allotment group, a cooking group and forest group. Where they can they will also offer support in providing transport to the groups, although this is not always possible. Covid unfortunately stopped some of the groups, although the outdoor ones did continue for much of it. Unfortunately I wasn’t able to attend the groups due to the distance from my house (transport was not always available) and my level of severe Covid anxiety. What I did manage to find though was an outdoor wellbeing group in my community which was run by an Occupational Therapist that worked in a local psychiatric hospital.
I joined the group at the time where I was so scared of catching covid I would hold my breath when passing people in the street. The group was small and all outdoors (we had shelter). What helped me to attend was as a group we talked about what we needed to make each other feel safe. When I attended the group I was severely depressed and anxious. I thought I was completely useless. I remember one of the first sessions I attended I shared knowledge I had about birds and the group complimented me on helping them to learn. This helped me to remember how I used to be. I became less fearful of doing things in my own garden as I would take home ideas from what I had done in the group. I was given the freedom to support other people in the group and contribute ideas to the sessions. It was a safe space where I could be open about how I was feeling and having space to suggest goals for the week and talk about how they’d gone which gave me a sense of accountability.
The fact that the group was local to me and was in a familiar venue took away some of the anxiety of attending it. It would be great to see more things like this in local communities as transport and fear of new places can be such a barrier to attending support.
Through no fault of the Community Rehab team I relapsed with my mental illness last year. I really struggled when the pandemic hit, I’d only been out of hospital for 3 months and had started to rebuild my life. I found all the lockdown rules really challenging. The quiet spaces I would go locally to help my mind suddenly became full of people, I struggled with severe anxiety when going out. The constant changing of rules was challenging due to how much I struggle with change due to being autistic. The lack of control over everything pushed me back into the unhelpful coping strategy that was my eating disorder. I became suicidal. I felt I had let my family down. I became more depressed than ever before. Although my depression doesn’t present in a diagnostically obvious way my community team knew me well enough to know that it was not my ‘norm’. They tried relentlessly to seek more intensive support through multiple avenues, but others didn’t agree with the risks or their view. If they hadn’t relentlessly believed me and stood by my side I think things could have been very different. The only thing I would change is allowing Rehab teams more autonomy when provisioning Crisis support for their patients.
Flexibility and tailored support
At times I can struggle in relationships with others. When I have been open about a difficulty with support from the service I have felt listened to, rather than judged. I found I was getting on well with the Recovery Navigator and asked if I could have support from them to tackle some of my fears around eating. The service, rather than questioning why I couldn’t do this with my Community Nurse, understood my reasoning for why it would be helpful to do it with the Navigator when I had worked well with and agreed to it. We spent a number of sessions building up to buying food in different settings and eating it. During these sessions we also talked a lot about food which helped me to identify some of the things I was still avoiding and it also helped to remind me of the things I used to enjoy eating before becoming unwell. As a result of this I have developed a significant freedom around food, I am now enjoying cooking different recipes for my family and have become more confident at using a few other places in my community. Without graded and graduated support I would never have been able to get to this point on my own.
The team understand and accept my autism diagnosis and have never questioned it. This has made me feel more secure in who I am. As a female on the Autism Spectrum it’s quite common to have my difficulties misunderstood by mental health teams, with attempts made to mis label them, this is confusing and upsetting. When I was in crisis last year and too fearful to have people in my house the team Psychiatrist came to my garden to review me on a rainy day. They didn’t cancel because it was raining or insist on going inside, they turned up and found a way around it (an umbrella under a tiny bit of shelter in my garden). I remember how much despair I was in and the kindness they showed toward me. Sadly it’s one of the few interactions with a Psychiatrist where I’ve felt truly listened to and validated. The team has provided me with written information when requested and often provided bullet point summaries of interactions, an adjustment that is set out in my autism passport that helps me to be clear on an interaction.
I am writing this article as I am due to be discharged from the service shortly, even in discharge the team showed flexibility, they agreed to extend my discharge date by a month to allow me to continue to work with the Recovery Navigator on getting out into the community. Another thing that also struck me was that they asked my consent to call my partner prior to my discharge meeting. He is invited to the discharge meeting, but they wanted to check in with him before then. They have always been supportive of my family, including calling my Mum after she had supported me in a crisis situation and offering carer support to my partner if needed. When I was in crisis last year my Community Nurse was always open to speaking to my partner whenever he needed to talk things through. I am leaving the team hopeful for my future, having regained some of the person I was before I was unwell. I am not ‘better’ but I am ‘better’ at managing some of the things I struggle with. Community Rehab may not be suitable for all patients, but I feel there needs to be more funding put into Community Teams to give them the staffing levels to be able to offer a more holistic and kinder service. I believe that some of the difficulties (but not all) arise from Community Teams just being too stretched to offer meaningful support. There is a lot to be said for taking things out of the appointment room and offering person centred practical mental health support and recovery.