Family Carers Services
A story by Falkirk and District Association for Mental Health
We offered a programme of activities for carers of an adult with a mental health issue. This included 2 art groups, 2 mindfulness training courses, 2 education courses and 2 alternative therapies courses of 6 weeks and the breaks all took place within our centre.
What Family Carers Services did
We publicised in local newspapers, to local carers organisations and circulated electronically to all on our data base, for example GP surgeries, community centres, associated professionals and within our own client group. Posters were circulated outlining activity/courses, dates, duration, location and aims and objectives for the training courses. Workers contact details were included to offer interested participants a fuller explanation of what to expect as well as a welcome get to know us meeting.
Our programme offered respite in the form of 2 art groups, 2 mindfulness training courses, 2 education courses and 2 alternative therapies courses of 6 weeks and the breaks all took place within our centre. There timing where over evenings and day times to accommodate carers ability to access these at times that suit. 2 staff and 3 sessional workers were involved with these activities/courses. 59 carers benefited from the Respite Activities and 35 were new to our organisation.
For some activities this was training in mindfulness over 6 weeks x 2, for others it was relaxation or interest in art in different forms/media over 6 weeks x 2, in others it was “pampering” learning and receiving an alternative therapy over 6 weeks and of 5 therapy treatment types.
What people said about the activities/courses includes, Mindfulness participant “I have been so angry and confused since my mum’s diagnosis but this course has made me see that my emotions are normal. It has given me a small piece of ‘me’ back that isn’t about the fear of cancer coming back. It’s made me more appreciative and understanding.
Education participant “I feel sad the group has come to an end as I felt so good and happy with sharing things and learning from other people”
Art participant “the great thing was I found I wasn’t thinking!! which was switch off bliss and relaxing me time”
Alternative therapy “At first I couldn’t seem to relax as I suppose I was tense but the therapy just seemed to work on me and by the end it felt like I was floating”
The Family/Carers Support Service is a successful part of Falkirk District Association Mental Health who offers a wide range of quality services to the local community. The Family/Carer Support Service has a register of 332 families with 102 new families this year, with 3 key elements one-to-one support, regular support groups and carers education and training courses.
Behaving and Feeling about their unique situation people can learn more effectively in dealing with the stresses in their lives. The courses are designed to create a culture and environment of safety, tools and resources to facilitate the development of skills, knowledge and experience to enhance motivation and enable positive change.
Jane is a 38 year old Scottish mother of 3, her partner Jim suffers from severe Obsessive Compulsive Disorder, anxiety and anger issues which can result in him raising his voice, punching walls and he has been physically aggressive towards Jane. Jim was diagnosed 5 years ago and is regularly seen by the psychiatric and psychological services his behaviour is extreme and has strong elements of paranoia attached.
Jim has been reported to social services as he can be both physically and verbally abusive towards Jane and as children are involved their welfare has to be protected. Jane was referred to the Carers Support Service by social services. One to one work found Jane was herself becoming almost paranoid (her own words) in her struggle to not rock the boat with Jim and jeopardise the families safety. Joint home visits were undertaken to help assess the safety of their children and assess their parenting capabilities and attachments with them.
Jane readily engaged the service as she was becoming isolated and unsure of where to turn, Jim was being supported and treated but Jane had little support available. With encouragement she agreed to attended the carers education course where she learned to not react to Jim’s paranoid comments but to respond from a position that both reduced Jim’s distress and distrust and increased her confidence in dealing with stressful situations within the family.
The education courses main threads are, information about mental health issues, effective ways of dealing with stress and other feelings, different ways of supporting and communicating with your friend or relative and opportunity to discuss and share ideas with others. This course is targeted at carers who care for someone with mental health difficulties.
Jane’s comment’s after attending the course included “I feel sad the group has come to an end as I felt so good and happy with sharing things and learning from other people” “finding out I am not alone and gaining confidence”.
Jane’s Warwich-Edinburgh Mental Well-being Scale moved from 21 to 36. During the 6 week course it was teased out that one of her biggest stumbling blocks was her guilt in coming to the course, this was in part her own fears of what she would be going back home to and in part fuelled by Jim's comments of why she needed to go somewhere to talk about him. However, she persevered and stated “I have to do this for me”.
Jane and a number of other’s from the course meet fairly regularly at each other’s homes, text and phone each other. All participants are also welcome to our regular support groups. Jane has not managed to the groups but contact is maintained through our newsletter and the odd phone call, I think importantly, Jane knows where we are will contact us if necessary.
“I have been so angry and confused since my mum’s diagnosis but this course has made me see that my emotions are normal. It has given me a small piece of ‘me’ back that isn’t about the fear of cancer coming back, it’s made me more appreciative and understanding”.
In broad terms the themes of the mindfulness course were to support the adjustment towards, an optimistic attitude, improve problem solving and foster positive social supports. The three main elements that focused the delivery of the course were, a structure, an opportunity to reflect and an invitation to gain insights. The courses overarching aim is to help people cope with the psychological challenges that arise from a cancer diagnosis. Helping people recognise and respond more skilfully to patterns of thinking that create and sustain emotional distress and to cultivate and develop healthier life style choices, decisions and relationships.
This was facilitated by an experienced trainer having delivered 12 course within the NHS and has attended mindfulness courses and retreats for over 5 years. This course was advertised to anyone having a caring role. Emily came to the course with minimal understanding of what mindfulness training could offer her, as her comments suggest she was angry, confused and in need of strategies to alleviate her distress. She presented as anxious, worried and suggest the diagnosis of her mother’s cancer had a traumatic psychological impact on her and her family.
As her comment below indicates she really enjoyed the course, gave her respite from her role, met other carers, reduced her stress levels and enhanced her quality of life. This shift I would suggest could be life enhancing as she now has skills to look after herself and can pass on to others.
Emily’s other comment’s include “ I feel more calm and feel able to deal with things better the meditation side of it has helped with this, I feel I have taken back some control of my life” ” I've been told often that I tend to put others before myself often (just my nature) but have learned not to be so hard on myself in certain circumstances. Often I was afraid of hurting someone and the only person that ended being hurt was myself”. ” I am more open to as to how I am feeling instead of keeping it all in. I am more tolerable to difficult situations as I can take myself out of the situation and get into my breathing”.
Quite clearly Emily has changed in her thinking, feelings and behaviour and has internalised a good deal of learning about herself and has adopted healthier life skills through experiencing the training programme. Although reticent at the beginning she was open to the opportunity and with a willingness to give it a go, as other participants were, which helped create and sustain a sharing and caring learning culture within the group. Emily had no prior knowledge of Falkirk District Association Mental Health and has now learned something of our organisation and the work we do.
Previous experience of Mindfulness Training courses has indicated that the skills learned on the course are sustained, perhaps not to the levels of practice on the course but the knowledge that the practices do work over a range of circumstances and situations. In particular mindfulness is effective in reducing anxiety and depression and is a self –management toolkit evidenced in NICE guidelines.
As with the previous case study the opportunity to share experiences with other carers is a crucial element in the building up of a “community” feel within the group and a key part of these courses. As the comments suggest it is from other carers and not necessarily from the trainers that lessons are learned and remembered. From this perspective the trainer’s role is one of creating the activities that foster sharing, caring and learning to look after oneself with compassion.
Course participants are invited back for a social catch up and to reconnect with the practice of Mindfulness. A flavour of other participants experience on the mindfulness course includes, a few times I found myself thinking about how the other person is doing something- knowing it’s not always me- stops guilt and negativity. Yes definitely! I consider other people’s emotions more and what circumstances are behind their moods. I am not as pessimistic as chatting to the others has helped me considerably. I have stopped judging myself in situations where others actions and responses are not what I expected. My old self would be looking inwardly to see what I could have done differently.
My attitude towards certain aspects of my personal life has changed. I accept my limitations now with a positive and accepting slant and not a negative one as before. I think I’m prepared to be kinder to myself. I don’t accept that I’m not invincible and as such am prone to ‘beating myself up’ over my current change in physical and cognitive ability. I've been told often that I tend to put others before myself often (just my nature) but have learned not to be so hard on myself in certain circumstances. Often I was afraid of hurting someone and the only person that ended being hurt was myself.
This was a course the writer had no experience of and was amazed to watch it in action, for example on the first evening when I suggested a tea/coffee break but not one person moved to get a break and continued with their art. It was one of those “what/ how did that happen moments” !!. This course was advertised for all carers within the local community.
One participants comments “the great thing was I found I wasn’t thinking!! which was switch off bliss and relaxing me time” This statement for me summed up the whole art experience and this was from a carer who did not have an interest in art but had to be encouraged to come alone. Her son, who had been staying with her had just recently been sectioned and diagnosed with Bi-Polar disorder so was badly in need of a respite break.
Other comments include “I was really inspired to buy art products and this class has given me the chance to meet others in the same situation as myself, which I found really beneficial” “ It made me realise I’m good at something again, I really enjoyed mixing with the people in the class, I could arrive stressed and go home so relaxed” “Surprised at being able to produce something I am pleased with !!” “ I found other participant’s all friendly and we got on really well. I lost myself in doing the work and as a result felt the benefit of 2 hours relaxation”
" I appreciated time for myself and rediscovering skills I thought were lost was a fantastic feeling” “ Learning something new that I had never done before and the confidence to do new things and spending time for myself and relaxing made me feel relaxed with everyone”
A good number of other comments and observations not recorded, where noticed and people who may not have come together under other circumstances getting on fantastically well whilst being involved in activities which interested them. One woman came to the class late and was fuming with her husband who had been late home from work told us of how her husband had greeted her after the group with apologies and some fear of her anger and she relayed that he was amazed as she had replied that she was fine, chilled and relaxed!!!. A nice anecdotal story of how the art class makes a difference.
The art class became the shining star of the whole program and was the most popular of the activities, almost without exception participant’s had commented on their evaluation questionnaire that they would pursue their art work by buying materials, attending other art classes and wishing to sign up for any further art groups we run.
The success of the art classes has been a surprise to the writer as most of my work is around offering; guidance, information, support and training so to observe participants become engrossed in the activities to such an extent their worries and cares seemed to drop away at least for the 2 hours within class.
What Falkirk and District Association for Mental Health has learnedThe funding has brought 35 new carers to have knowledge and experience of our organization and with this the cared for person has more information and potentially support systems available. We have attended other care service providers which we have worked collaboratively with, whilst other care providers have become more aware of what we do for carers with the range respite activities we have offered. 59 carers have benefited from the additional program of respite activities offered.
The challenge perhaps has been shown by the absence of interest from the statutory sector in terms of carers being informed or referred to our respite activities. It is felt that we could have perhaps placed more emphasis on publishing and highlighting this within these areas. As the activities were planned over evening, day and weekend times this was in recognition that carers have other demands and as such varying the times gave options and choices.
The flexibility, experience and knowledge of the trainers focused on offering the individuals in the classes their choice of activity and involvement. Built in breaks always offer more for developing friendship’s and relationships, especially the more “formal” learning courses.
We attracted new carers by advertising the respite activities widely by speaking with other carer forums, by local press releases, through our electronic newsletter, our data base of professional contacts and by word of mouth. As the activities offered varied the range of people interested would be maximised to attract those who may not have interest in “normal” or main stream carer support services. The idea that the activities were respite can trigger carers into thinking about taking some well-deserved time for themselves