The Rollercoaster journey started about 2 ½ years ago when my daughter was really struggling with her mental health. My daughter was in an inpatient unit & I was a single mam, desperate for support, living in fear every day. In my search for support I approached our local CAMHS to talk about setting up a parent support group. Although there were some initial reservations, I eventually found a CAMHS nurse who was willing to give it a go. So me the desperate mam, my sister (who had supported her daughter through anorexia) and a ‘can do’ CAMHS nurse founded Rollercoaster Parent Support Group. The group was named Rollercoaster and ran once a month on a Wednesday evening in a CAMHS building. For the first three sessions, nobody came and I began to think it was just me who needed support! I’ll never forget the first mam who walked through the door, she was desperate and lost, her son was suicidal and she didn’t know what to do. The group gave her hope for her son but that night also gave me hope because I knew then I wasn’t alone and that there was a need for this group. So we powered on and gradually more and more parents came through the door.
The Rollercoaster journey started about 2 ½ years ago when my daughter was really struggling with her mental health. My daughter was in an inpatient unit & I was a single mam, desperate for support, living in fear every day. In my search for support I approached our local CAMHS to talk about setting up a parent support group. Although there were some initial reservations, I eventually found a CAMHS nurse who was willing to give it a go. So me the desperate mam, my sister (who had supported her daughter through anorexia) and a ‘can do’ CAMHS nurse founded Rollercoaster Parent Support Group.
I was a director of a small community interest company; Success (North East). Although the business was struggling due to the amount of time off I was taking to care for my daughter, we set up the group under the Success (North East) business infrastructure to ensure we had relevant insurance & safeguarding covered. So, in January 2015 a partnership with Tees, Esk and Wear Valley Trust CAMHS began.
The group was named Rollercoaster and ran once a month on a Wednesday evening in a CAMHS building. For the first three sessions, nobody came and I began to think it was just me who needed support! I’ll never forget the first mam who walked through the door, she was desperate and lost, her son was suicidal and she didn’t know what to do. The group gave her hope for her son but that night also gave me hope because I knew then I wasn’t alone and that there was a need for this group. So we powered on and gradually more and more parents came through the door.
Parent to parent support was offered, guest speakers provided information on topics such as self-harm, anxiety, treatment options, positive thinking and the CAMHS nurse provided the direct mental health advice when it was needed. We developed a group ethos & quirky little aspects to the group such as putting chocolate with a difference on the table; Jars filled with Toblerone you’re not alone, Kit Kat have a Chat & Wagon Wheel how do you feel, brought a lighter side to some really difficult conversations. Some parents came and cried the whole time, others were angry, frustrated or really suffering with their own mental health and feeling completely isolated. We developed a motto which we say at the start of every session “We get strong together because we do the best we can”. Group after group feedback was really positive:
“Helps to know we are not alone in some of our issues”
“The group has given me a lifeline”
“I was a nervous wreck the first time I came and had struggled for so long in silence, it has helped me so much”
“Being able to be open about things without people judging”
“Sharing ideas has given me hope things can get better”
“Good-lots of advice and things to try and contacts for help”
The group was & continues to be parent led but professionally supported and it seemed to provide a winning combination:
Fast Forward 2 ½ years: (present day)
The group has really evolved and as well as providing peer support and information sessions it has provided a mechanism to enable parents voices to be heard (more information in co-production section below). Information and evidence collected during the pilot has enabled Success (North East) to go on to secure a contract to deliver parent support in County Durham. The contract has provided funding for dedicated staff time to continue to develop and extend the project. From February 2017 the project model now incorporates the following aspects:
Rollercoaster Parent Support Groups
Two groups are offered per month, one runs during the day at the County Cricket Club and the other runs on an evening in a CAMHS building. The groups are co-facilitated by a parent lead, parent volunteer and CAMHS Clinical Nurse Specialist. Each session runs for 2 hours and incorporates guest speakers, group discussions, ideas sharing, activities, problem solving and information on services available to support parents. A range of leaflets and books are available at each session (Library funded by Charlie Waller Memorial Trust detailed below in wider support)
Social Media and E-Network Support
A Facebook page, closed group, Twitter account and email network has also been established. This enables the project to reach those parents who aren’t able to access the group support. It provides an excellent forum for local and national information sharing as well as online support.
“I just wanted to say that I have never had the opportunity to attend any of your groups, but just being on your email list, gives me comfort, knowing I could still come along for support if I got the chance. “
Parent Peer Support Training
Over the last 2 ½ years so many parents have supported each other and have told us peer support is powerful & effective. Knowing you are not alone by talking to someone who is walking in similar shoes brings strength you can’t get from anywhere else. We now want to take this to the next level by offering parents with experience of supporting a child with mental health problems the opportunity to take on a more formal parent peer supporter’s role. An Introductory session will take place in June 2017 & Training will commence in September 2017. Following training, peer supporters will be given a toolkit to enable them to offer one to one support in local areas or groups and information sessions to children’s workforce staff. In addition to this, regular supervision will be offered to our peer supporters to enable them to work through their journey and grow in a supported way. The long-term goal is for CAMHS to employ parent peer supporters as part of their workforce.
Parent Advisory Group
Over the last 2 ½ years parents from the group have represented their views and voice at a variety of local and national forums (detailed in co-production section). The involvement of parents has made a real difference to service development. The Parent, Children and Young People’s Mental Health Advisory Group’s will provide a formal mechanism to ensure the voice of parents who are supporting a child with emotional and mental health problems is heard and included in future developments, plans and service improvement. This will lead to on-going and sustainable co-development and delivery. We are currently working with organisations to develop roles for parent representatives e.g. TEWV would like a parent advisor to work with the Currency and Tariff Development Team and have provided a five-point job description to help recruit a parent
Professional Mental Health Champions:
This involves engaging with the wider children’s workforce to raise awareness and promote the role parents play in supporting their child’s mental health. Short training sessions and presentations are delivered to different teams e.g. police, children’s services and professional mental health champions are recruited. The professional champion will provide support and information to other team members and liaise with the Advisory Group around any issues and concerns. An e-network sharing group ensures they are kept up to date with service developments.
Parents are telling us the Rollercoaster project is making a difference; they feel less isolated, have picked up tips and strategies to help support their child and for coping themselves. We have had and continue to receive so much positive feedback.
“Had a great supportive talk. Leaving less stressed”
“Been nice to not feel alone and a great set of people with different views”
“Very supportive session with other parents in similar situations “
“Was very helpful listening to people”
I think there a few reasons why it works:
Its Parent led and developed
CAMHS Partnership & support
Structure and Ethos-allows flexibility but also provides boundaries enabling a safe space to share
Provide tips, strategies, ideas for families to try = solutions (sometimes)
Keeps a fun element e.g. Jars of chocolate on the table with themes -helps to lighten the mood
We do what we say we will do-e.g. make a referral, ring a parent back, send out the information we said we would-this builds trust
Wider Active Support
The project was founded on a partnership basis. The partnership with Tees, Esk & Wear Valley Trust CAMHS is fantastic. The group is parent led but professionally supported and looking back this is part of what makes it work so well. Parents feel comfortable to share because the group is parent led but direct mental health advice is readily available and improves access to CAMHS services. When parents have brought issues relating to CAMHS, these issues have been resolved quickly. Sometimes this involves a direct action from the CAMHS Nurse other times issues are resolved within the group once particular issues are explained.
“It was great to have the option to talk to a CAMHS worker”
The group works with a wide variety of other agencies e.g. County Durham Carers, SENDIASS, One Point, Young Carers, Educational Psychology, schools etc. Partnership organisations are invited either to inform parents about their service or to address any regular issues that may be arising from parent’s discussions. For example, there was a reoccurring theme around the lack of support around the inpatient process. This led to the local CAMHS Manager, Inpatient Manager and NHS England Commissioning Manager attending the group. Parents looked at what was ‘Pants’ and ‘Tops’ about inpatient & CAMHS services as well as put on ‘their thinking caps’ to look at what would make things better. A variety of direct actions & change occurred as a result of these discussions.
The group have also begun work in partnership with The Charlie Waller Memorial Trust who have provided funding for two projects:
The development of a mini library stocked with books around emotional and mental health for families to loan out for free. Young people were involved in the design & painting of the library boxes and parents helped to select books. These books are now regularly loaned out to families.
The development of parent training sessions. Three sessions (Coping with Self-Harm, Managing Overwhelming Emotions and Coping in a Crisis) were developed based on common themes evolving from the group. All sessions were co-developed and co-delivered by a parent & CAMHS Nurse. 30 parents accessed the sessions & feedback was extremely positive. An assistant psychologist is currently working on writing up the evaluation and further funding has been secured to deliver 3 more sessions. (22 parents signed up within 1 week of advertising)
“Thank you this has been a fantastic help. Sessions like this are an invisible cloak of armour that will really help”
“I feel more confident and reassured about dealing with everyday support to dealing with a crisis situation”
Our most recent partnership is with Durham County Cricket Foundation. When we were looking for space for the second parent support group, we discovered (by chance) the foundation had set a priority to support people with mental health difficulties. After a meeting and tour of facilities a new partnership began. We were offered a great space and opportunity for parents and children to take part in activities. Parents and staff at the foundation have gone to develop a cricket themed motto which will be used for publicity and raising awareness around mental health.
Let’s Bowl Out Mental Health Stigma
If I think of my child representing the wicket and I am the batsman guarding that wicket (my child). The ball (the mental health) comes with some force and I want with all my strength to simply ‘bat’ it away. In real life as a parent I feel so alone, but in cricket the batsman cannot bat alone-lets work together to tackle mental health
A parent’s view of supporting a child with mental health difficulties with a cricket twist
1.Supporting a child with mental health problems is like walking down a ‘corridor of uncertainty’
2.It takes us ‘beyond the boundaries’ of what we thought was our parenting role
3.Sometimes we want to ‘duck’ from our child’s problems, we are in a ‘back spin’ and don’t know what to do-we are completely ‘stumped’
4.The mental health can throw a ‘googly’ we think things will go one way but they actually do the opposite!
5.Sometimes it’s so hard we feel it’s the ‘end of the innings’ but each day we ‘start another’
6.Help us ‘cross the line’ and feel bowled over by the support we receive
7.We want services to go ‘all out’ and help us understand our child’s mental health
8.Mental health tests us-Please listen, don’t judge and help us let out our feelings
9.Tell us who can help and support the whole family so we can be on the up again
10.Coach us about practical things we can do and use words we understand-we will always play on
11.We often feel very alone but want to be part of a team; keep us on side together we will tackle mental health problems and form a winning team
‘How’s that’ for tackling mental health!
Co-Production
The project was founded by a parent with lived experience in partnership with CAMHS, and so was built on co-production. Opportunities for parent’s voices around their experiences of supporting children with mental health issues, as well as ideas for improving provision have been heard at forums and events both locally and nationally. This has led to opportunities for parents to be involved in co-production and development of mental health services. These include:
Group founder was a Parent Co-author for MindEd for Families (What to do in a crisis & Keeping Ourselves Strong) http://minded.e-lfh.org.uk/families/index.htmland the wider parent group helped to review and contribute to materials throughout the process.
Group Founder is a Parent representative for National Collaborating Centre for Mental Health (NCCMH) (Developing ways to improve access and waiting times for CYP 24/7 Crisis Care and Achieving Better Access to Mental Health Services for Children and Young People). The wider parent group attended two events in London linked to this work and made a strong contribution to the work.
‘ Attending the event in London It has made me feel valued and listened to as a parent. While going through a rough journey it has gave me strength and hope that a difference could be made to children and their families in the future.’ Parent
” Parents and carers have also brought a wonderful creativity to our work together, as well as humbling reminders of how important it is that services listen to and support carers of the future. Together we can make a real difference to the experience of children and young people with mental health difficulties, and for their parents and carers.“ Andy Cosgrove National Clinical Advisor
Several parents from the group have become an Involvement member for Tees, Esk and Wear Valley Trust CAMHS and played an active role in staff recruitment and Interview panels.
Group founder is currently a Parent representative for Tees, Esk and Wear Valley CAMHS Quality Assurance Group which enables parent issues that arise from the group to be discussed and actions taken where necessary.
Many group members have become part of the national YoungMinds Parent Say project
The group are involved with delivering presentations, talks and workshops around parents experience and the role parents play in supporting their child’s mental health at a variety of events:
Tees, Esk and Wear Valley Trust Recovery Conference and Co-Production Event
CAMHS World Mental Health Day event
County Durham Emotional Wellbeing and Effective Learning Team Conference
National Crisis Concordat Event
Charlie Waller Memorial Trust Mental Health Conference
GP meetings and learning sessions
Police training
County Durham Educational Psychology Team
County Durham Education Health Needs team
CYP Eating Disorders Event
“It has had a real impact-we will be looking at strengthening the offer to parents of children we work with on the basis of this” Peter Mulholland Educational Psychologist
The group contributed to national research carried out by The Association of Young People’s Health looking at the role of parents in supporting children with mental health problems and two parents attended an event at The House of Lords
Coordinated parent consultation events for CAMHS and inpatient services (described in wider support)
Took part in a consultation process with Carers Trust to help develop The Triangle of Care supplementary guide for CAMHS
Parents views & experiences have been shared at County Durham Local Safeguarding Children’s Board Self Harm & Suicide Group & County Durham Children & Young People Mental Health, Emotional Wellbeing and Resilience Group
Looking Back/Challenges Faced
Looking back, I wouldn’t do a great lot differently in terms of the ethos and format as it has been a real process of discovery and learning. However, the things I have learned along the way are:
It takes time to establish (no one showed up for our first three sessions and attendance was low in the first year.). It has taken 2 ½ years to get to the point we are at, so for anyone considering setting up a group or commissioning such a service should take this into account. (longer term funding essential)
A mixed approach is needed-groups, telephone support, email group and social media. Different parents will access different aspects depending on where they are in their journey. Coordinating this service really highlights how much stigma still exists: Some parents who walk through the door and share their story have not even told a single-family member, others simply cry at the relief of telling someone without being judged and others will only access social media posts or emails due to childcare issues or the fear of attending the group.
A true partnership with CAMHS and other multiagency partners is essential. Whilst the group is parent driven and led, the CAMHS clinical advice and input has been invaluable. Parents report that direct access to mental health advice in an informal, relaxed setting in a group that is led by other parents has really helped them because they feel comfortable to ask questions.
The CAMHS Clinician also provides the parent lead with monthly supervision and support-this is a vital aspect of the project.
The group and structure has provided an opportunity for a range of co-development opportunities e.g. Training sessions for parents being co- developed and co-delivered, involvement in delivering workshops at conferences and managers just coming along and really listening to parents. This helps parents feel useful and valued at a time when family life can be feeling negative and chaotic. This aspect is just as valuable as providing direct support and really does make a difference, particularly when parents see the impact of their voice
Sustainability
We initially led the group on a voluntary basis and this limited the amount of time that could be spent developing the project. Securing funding has made a difference and will enable us to develop the Parent Peer Support Training Programme (detailed above) which will contribute to sustainability. Part of this process involves each peer supporter becoming a volunteer with Tees, Esk & Wear Valley Trust which will help towards sustainability as volunteer travel expenses, on-going training & support can continue via the Trust should no further funding be secured. Ideally we hope to secure another years funding to enable the Parent Peer Support programme to become well established and develop a unique pathway in its own right. The Trust has a wide involvement and recovery programme but the needs of parents supporting a child are different to adult mental health and we want to ensure a targeted programme is embedded. The long-term goal is that parent peer supporters are employed as part of CAMHS teams!
Achievements of Rollercoaster include:
• Highly commended in 3 categories in PPIMH Awards 2017
• Selected as a YoungMinds Trailblazer project
• Parent Co-author for MindEd for Families and the parent group helped to review and contribute to materials.
• Parent Representative for NCCMH and parent group attended events in London and continue to give input. ‘ Attending the event in London has made me feel valued and listened to as a parent. While going through a rough journey it has gave me strength and hope that a difference could be made to children and their families in the future.’ – Parent
Several parents have become Involvement members for TEWV Trust and play an active role in staff recruitment.
• Parent consultation events for CAMHS and a variety of direct actions & change has occurred
• Parent representative for TEWV CAMHS Quality Assurance Group which enables parent issues that arise from the group to be discussed and actions taken.
• Involved with delivering presentations, talks and workshops around parent’s experience and the role parents play in supporting their child’s mental health at local and national events
• Delivered training to Police & GP’s & Educational Psychology Team
• Involved with The Association of Young People’s Health Research http://www.youngpeopleshealth.org.uk/wp-content/uploads/2016/11/AYPH-Parenting-briefing-11-nov-2016.pdf
• Consultation process with Carers Trust and production of a DVD to develop The Triangle of Care guide for CAMHS
• Partnership with Charlie Waller Memorial Trust – co-developed and delivered parent training sessions and mini libraries stocked with books around emotional and mental health for families to loan out for free.
All of the above is underpinned by the young people and families which are empowered and supported by the project. We have a number of cases where parents knowing how to react and help has really deescalated a situation. Ultimately, the group supports parents, to support their children.
Evaluation (Peer or Academic)
The service has yet to have a formal evaluation. We use post- it note feedback to capture the parent’s experiences at the end of each group. We have hundreds of comments including:
“The advice we have been given has helped-we are now happy about the future for our grandson-a big thank you to everyone”
“Really great to be part of something that WILL help!! Thank you”
“No matter what part of the rollercoaster I am on I always leave with the benefit and advice on how to improve things”
“Good – was able to find out about local services and teams that I can get involved. Met some people who are going through the same issues we are having or similar. Access to support and info for parent’s fab. To be able to speak about your child and not feel like an alien”
Amazing night
Really enjoyed session – can only do half session but makes me feel better
Great night again very informative, good company
Absolutely fab loved the openness
A lovely group tonight, made me feel strong again
Great session about independent support for EHCP. Great to catch up with other parents
Was nice to know you are not alone & other people are going through similar things
This was a great first meeting for me will be back next month
Lovely Group
Welcoming-I liked the fact there were other professionals here who have children with problems. It was good to hear other people’s stories & how they feel
Really enjoyed tonight feel a lot lighter
I have felt supported, this session have given me more insight into what other support will benefit myself and myself and my son
Amazing night, EHCP plan information was very useful
The steady growth of people accessing is telling us we are doing something right!
The parent training developed in partnership with the Charlie Waller Memorial Trust is being evaluated by an assistant psychologist so we will have some external feedback from this.
The feedback we receive and growth in people accessing the support tells us we are meeting people’s needs. Parents who attend the group have provided case studies for The Association of Young People’s Health research around the role of parents supporting their child’s mental health. The examples below provide direct evidence of how the project has improved outcomes for parents:
Example 1
“The group has been a lifeline. Before our son was diagnosed, we felt a little alone perhaps even scared of what might come. We struggled to cope emotionally and as a family unit. It was fantastic to meet people in the same situation. We exchange problems and we shared solutions that we had found that worked. Having someone from CAMHS there was a massive bonus as appointments with CAHMS were sporadic to start with. Being part of something like Rollercoaster was somewhere to vent frustration, but also to learn why our unique children do what they do, and more importantly, how to support them in understanding what they are going through. We have made friends with other members and also chat when not within the group environment. I have no hesitation in saying that we as a family are now in a better place due to being a member of the group. The knowledge we have gained from visiting professionals who took time to come and speak to our group was truly amazing. It has been one massive journey and thanks to the group, we have not been on it alone!
A Father’s View
Example 2
I was at rock bottom; one of my children was having behaviour problems at home and school, and my other child was having anxiety and emotional difficulties as well as physical health problems on top of an autistic spectrum/social communication difficulty diagnosis. My marriage had broken down, we were struggling financially, I felt like I was out of my depth and alone. I felt like I was failing my children and getting worn out. I saw an advert for the support group on the door of the toilets and took a flyer away with me. I spent the first few meetings mostly listening and crying. It was such a relief to be with people who were also experiencing problems, who understood how it feels to see a child you love become miserable and hostile, lashing out at you when you try to help them. Going to the group helps me to feel less isolated. We share our experiences (good and bad) and learn together supporting each other. I come out of each meeting feeling more relaxed and able to cope with whatever happens at home. The various speakers and presentations are informative and helpful. The group reminds me that after every low point, things eventually get better in some way or other – so it takes the heat out of the feeling of crisis and desperation.
A Mother’s View
Example 3
I read about the Rollercoaster Parent Support Group at the Acley Centre while attending an appointment with my daughter approximately 1 and a half years ago. At that time I was really struggling as my daughter who is now 17 has suffered with severe anxiety, depression, voice hearing, eating difficulties, obsessional behaviours and has been seen by CAMHS since she was 13 years old. I felt very isolated and even though I knew I wasn’t alone as many other parents are in a similar situation, I felt very alone and I realised that the ongoing stress and worry was leading to me struggling with my own Mental Health. I was extremely anxious when I decided to go to the first Rollercoaster Group and because of my daughters difficulties I couldn’t even tell her where I was going, as I was so worried that this would have a negative impact on her. The group introduced themselves and each parent gave a brief outline of their situation. It was quite nerve racking to talk about my daughters difficulties as I had kept a lot of information to myself for various reasons. The instant relief I felt after I had spoken I will never forget and am so grateful to Wendy and Nicky. The support from the group was just what I needed and to hear genuine stories from other people, listening to different ideas about what has helped them, listening to the difficulties they have faced with agencies involved with their child and being able to have an open discussion where you didn’t feel like you were being judged was a great feeling. I have attended quite a few of the Rollercoaster Groups but due to my daughters ongoing difficulties haven’t been able to attend them all but I am looking forward to the next session. After every meeting I have been able to attend, I have always left feeling less anxious and empowered by others. It is one of the hardest things to watch your child suffer with Mental Health Difficulties and to feel so helpless, but to know you are not alone and receiving advice from others to help you along the way, has made a massive difference to myself and it has supported me through some extremely difficult times.
A Mother’s View
Example 4
Before the support group I felt alone, desperate and had no hope. Since attending the group support has been fantastic. I saw that I was not alone and I have gained hope and strength. Without the group I would not be the person I am today, I am very grateful to Wendy, Tracy and Nicky for helping me through my journey.
A Mother’s view
As part of the research parents were asked: Would you recommend the group to others in your position? And everyone said yes:
“Most definitely. Other parents are going through the same struggle as you. The saying of ‘ a problem shared’ certainly works within this group. You also find that most of the children have very similar traits. This is something that is easy to relate to”
“ Definitely. Before I went to the group I felt I was struggling, alone and completely out of my depth. It really helps to spend time with people who understand at least some of what you are going through”.
The group has really evolved over 3 years, and as well as providing peer support sessions, it has provided a mechanism to enable families to get involved in the development and improvement of CAMHS services.
The project now offers:
• 2 Parent support groups per month (8-20 parents attend each session)
• Social media groups and an E-Network (200+ E-Network, 700+ Facebook like page, 130+ Facebook closed group, 350+ Twitter)
• Parent Advisory Focus Groups (covering a variety of topics to involve families in design, development and delivery of CYPMH services)
• Themed training sessions around topical issues (All sessions co-designed and delivered-over 100 parents attended)
• Parent peer support training (Training which enables parents to offer others direct support)
All aspects of the project are delivered in partnership with CAMHS professionals or the wider children’s workforce who support CYPMH.
Sharing
Sharing is at the heart of the Rollercoaster Parent Support Project.
Firstly, within the groups parents share their heartfelt and often very difficult stories. Through the advice & information received, their difficult & challenging journeys can become a little lighter. I found the combination of sharing my story & supporting others both healing and empowering. Many other parents have gone on to tell us how sharing their story and realising they are not alone provides support & hope they had not previously had.
Was nice to know you are not alone & other people are going through similar things
Really enjoyed tonight feel a lot lighter J
I have felt supported; this session has given me more insight into what other support will benefit myself and my son
Despite all our worry and anxiety about the future. It’s great to hear that there is always going to be a better day – a big THANK YOU rollercoaster
Great session today thanks – was lovely meeting other parents going through similar struggles makes you realise we are not alone we are on this journey together!
Another important aspect of sharing within the project is that it raises awareness that mental illness can affect anyone. People come to the project from all walks of life – employed, unemployed, retired, disabled etc. and no matter what their background a problem shared is a problem halved (at least we like to think so!) Experiences, advice and support are similar no matter which house the mental health lives in
I liked the fact there were other professionals here who have children with problems. It was good to hear other people’s stories & how they feel
I work in child protection and in two years I have never spoken about my son’s difficulties. For the first time, I can be open and not feel I’m being judged
Sharing with Action
The project enables people to share stories and experiences but also provides a forum for people to pass on advice or ideas. Parents will often trust and try ideas recommended by others who have been in their shoes. This brings about real change and makes a difference to children’s and parents mental health.
I heard about the group at my sons (and my) most vulnerable point. His suicide attempt came as a great shock & meeting other parents and carers who were experiencing the same was a lifeline. Contact via email/social media & face to face meetings have been crucial to our recovery as a family
It’s good to hear about other parents in the same situation. To gain advice on where to go and what to ask for, to find out what help is available and gain insight into the different services available. Just to be able to tell your story and have people understand and not judge. To be able to cry and not feel guilty.
One of the other aspects of sharing the group has really embraced is with children’s workforce colleagues. It became evident quite early in the project that lots of similar issues and themes were evolving. The only way some of the more negative aspects would change would be to engage in dialogue with organisations to share parent’s experiences, stories and ideas. A presentation was developed reflecting the group founders personal story alongside the common themes and ideas from a wider group of parents. This has been shared at a variety of forums which include:
Tees, Esk and Wear Valley Trust Recovery Conference and Co-Production Event
‘’I am still reflecting on everything you said. One of the most powerful critiques of the #BPD label I have ever heard.’’ – @allyc375 Survivor
CAMHS World Mental Health Day event
County Durham Emotional Wellbeing and Effective Learning Team Conference
National Crisis Concordat Event
Charlie Waller Memorial Trust Mental Health Conference
GP meetings and learning sessions
“wonderful presentation to GPs yesterday. Insightful & heartfelt. I learned a lot. Thank you”- GP
Police training – parents were asked to share their experiences around police involvement. 8 parents responded and every story was positive which in turn has had a positive impact on Durham Police colleagues.
I’ve had positive experience with police: I called a few times last year when XXXX had ran off with risky intentions. They didn’t hesitate to put a call out to all officers in our area, and when they brought her back home they talked to her while an officer spoke to me, they stayed until I was happy with them to leave and even made phone calls to crisis team on my behalf. Community officers called round a week or so after an incident to offer any support they could by suggesting where we could access extra support. They spoke to XXXX clearly and appropriately about actions and consequences. I found they stayed professional but showed understanding. Only thing that was unhelpful was when XXXX was on leave from hospital and absconded in Newcastle, the police said they could not take her back to hospital, (as they don’t do that anymore) this was difficult as XXXX was refusing to go back and was aggressive towards me, making it dangerous for me to manage. They did agree to take her back in the end.
County Durham Educational Psychology Team
“Before this presentation-I often thought of parents as part of the problem rather than solution” Advisory Teacher
County Durham Education Health Needs team
Tees, Esk and Wear Valley CAMHS Quality Assurance Group which enables parent issues to be discussed and actions taken where necessary.
The group also shared their experiences, stories and developed ideas for the following:
Took part in a workshop with the local CAMHS and Inpatient services Manager to help improve services. Parents voted on top priorities and these were built into CAMHS action plan.
8 parents attended two events in London & shared experiences to contribute to National Collaborating Centre for Mental Health (NCCMH) Achieving Better Access to Mental Health Services for Children and Young People).
“Going to London After such an horrific ordeal during my son’s mental health difficulties it is now a positive step for myself and the group to have our voices heard. I can totally connect with other members I feel understood and not alone.” Parent
“The carer group have been an essential part of the development process and have contributed massively to this work. You have brought with you the unique perspective that only a parent/carer can bring. We have a wide variety of experts contributing to this but carers bring the expertise in its truest form.” Sara Waite/ Project Manager National Collaborating Centre for Mental Health
Contributed to national research carried out by The Association of Young People’s Health looking at the role of parents in supporting children with mental health problems and two parents attended an event at The House of Lords
Shared experiences at a consultation with Carers Trust to help develop The Triangle of Care supplementary guide for CAMHS
Parents views & experiences have been shared at County Durham Local Safeguarding Children’s Board Self Harm & Suicide Group & County Durham Children & Young People Mental Health,Emotional Wellbeing and Resilience Group
The most important aspect of the sharing is when people are willing to see things from a parent’s perspective and recognise the role parents play in their child’s care, treatment and recovery. This has been demonstrated many times, initially via feedback following a workshop or presentation. We are now starting to see the knock-on effect e.g. services referring parents to the project, services developing because of parent’s ideas -CAMHS have developed training, parent resources have been added to Local Safeguarding Children’s Board Self Harm Pathway. Sharing really is making a difference and improving experiences for children, young people and families.
Is there any other information you would like to add?
I would just like to add a few quotes from parents to show the difference the project is making to them personally as well as CYPMH Workforce staff.
Parents • “The group has given me a lifeline”
• “I was a nervous wreck the first time I came and had struggled for so long in silence, it has helped me so much”
• “ After struggling for many years without support having not been aware what groups are out there, it is reassuring to see groups that have been formed specifically for the types of behaviours we are trying to manage and situations we are finding ourselves in as a family”
• “The advice we have been given has helped-we are now happy about the future for our grandson-a big thank you to everyone”
• “No matter what part of the rollercoaster I am on I always leave with the benefit and advice on how to improve things”
• “Good – was able to find out about local services and teams that I can get involved. Met some people who are going through the same issues we are having or similar. Access to support and info for parent’s fab. To be able to speak about your child and not feel like an alien”
• “Before the support group I felt alone, desperate and had no hope. Since attending the group support has been fantastic. I saw that I was not alone and I have gained hope and strength. Without the group I would not be the person I am today”
CYPMH Workforce “Parents group has supported families by providing a supportive opportunity to explore their concerns, seek solutions to move forward to enable them to support their children. The group is restorative for families, normalising their experiences which helps build their resilience to continue to support the young people. The co-facilitation with CAMHS also supports CAMHS understanding of the parents perspective to continue to strengthen the family approach. It also allows for us to step in and review individuals care where things may not be going well as well as providing an opportunity to have difficultconversations with families where expectations may not be realistic.” Donna Sweet Head of Service CAMHS “Opened my eyes to the impact our decisions have on family and just how much we influence the outcome of the situations. Also, how much our actions can impact on how the family feel” Police officer
“It has had a real impact-we will be looking at strengthening the offer to parents of children we work with on the basis of this” Peter Mulholland Educational Psychologist “Before this presentation-I often thought of parents as part of the problem rather than solution” Advisory Teacher
Completing this application has really made me realise how far our family has come. 2 ½ years ago my daughter was in an inpatient unit and I was told to expect this is the way life would be-my daughter would be in and out of inpatient services throughout her life, I am so glad we didn’t listen to the mental health professionals who said that! My daughter eventually received the correct diagnosis which brought understanding and recovery. She is mentally well, has secured a higher-level apprenticeship, has passed her driving test and is living a life like any other 18-year-old. I couldn’t be more proud.
I am passionate about helping other parents and providing good support structures to enable parents and families to feel supported when they are caring for a child with mental health difficulties. One of the most difficult and challenging life experiences has now led to something good and positive that helps others. If I hadn’t gone through what I did as a parent, this group and support project would not exist. It seems only right to end this submission with a few words from my daughter-who really is the true founder of this project.
“Reading through my mam’s application for this award has really made me appreciate everything I now have. I am sat on the couch in the comfort of my own home, ready to take on another week at work tomorrow morning (and any other challenge that comes my way), feeling so far away from those moments spent with police, mental health professionals and in hospital. Seeing the positive impact the group and our experience has had on so many lives has made me realise that my struggle was not in vain. My life and resilience has been moulded by my struggles and I would not be the person I am today without that, and the support of my wonderful mam. We have lived through everything the group stands for, we got strong together!”
