Carer stories

Hope, autism and mental health

Where does 'hope' fit in?

- A blog written by Rebecca Jones

I’m a parent and carer of my seventeen-year-old, neurodivergent son, as well as an adult service user of LPFT myself, having been diagnosed with post-traumatic stress disorder in 2018 and prior to that depression, obsessive compulsive disorder (OCD) and an eating disorder in 2003.  

I have had personal experiences with trauma, loss, mental and physical pain. I have spent the last four years trying to find suitable support for my son and in the process, we have grown emotionally and closer as a family.

I have realised that one fix to our family’s needs may never exist. We certainly haven’t found it yet. I often rested all of my hopes on one referral or appointment, hoping it would be the one to answer all of our prayers. However, life can and has become more manageable and enjoyable now we that have a multidisciplinary team (MDT) approach.

By multidisciplinary, I mean all agencies working together to provide support, including statutory agencies such as schools, colleges, community paediatrics, GP practices, Children and Adolescent Mental Health Services (CAMHS), Special Educational Needs and Disabilities (SEND) teams, the working together team and maybe a few more that I have failed to give mention to, as well as non-statutory bodies such as charities, family and friends. This makes the journey to wellbeing and a meaningful life a smoother one. The recipe for success!

Don’t put all of your eggs in one basket or the egg marked ‘hope’ will definitely crack! Stick to the MDT approach.

As with all services, communication is key. If you or your child/young person needs support, pick up the phone, call or email and ask for it. Specialists are not mind readers and no news is usually good news. So, give them the updates they need. I find emails easy, then you can just copy the relevant people in.

My advice would be to keep your family’s multidisciplinary team of support around you like a shield of armour against the challenges of the world.

Autism is sometimes described as an umbrella or spectrum. I prefer umbrella, as I don’t like to think of there being a top and bottom of a spectrum. I like the thought of an interminable circle, with individual brightly-coloured sectors--which is not only spectacular, but has a very useful place in the world.

I feel mental health is also a circle of colours we can often cycle through. Sometimes we see it as dark and gloomy, but in recovery, we see the world in technicolour again as we experience growth, lessons of assertiveness, self-love, life skills and, last but not least, hope.

My experience with the adult service and the growth I have felt has moulded me to be more empathetic and caring. It has also inspired me to offer my support to others. 

But before you can support others, I have learnt that you must first take care of yourself.

This is my idea of tranquillity--being in my garden, listening to the birdsong and the odd neighbourly noise here and there as people live their busy lives around me.

But it’s not always been like that for me, and I understand that, for many of you, those tranquil feelings may feel few and far between. There are times when I falter too, but it’s never for long and usually when I am faced with challenges such as bereavement and illness.

For me, it is important to have five or ten minutes a day for myself, energy accounting or depositing energy. I’d recommend it! Here are a few ideas of how you could spend your time:

• Play a few of your favourite songs while you sing along like nobody is listening!
• Stop and watch the sunset
• Open the window in the morning and listen to the birdsong in bed for a few minutes. Imagine what they are up to, nesting, feeding, calling to the young or a mate. How many different birds can you hear?
• Take your morning cuppa outside and take in the fresh air and the surroundings
• Talk to a friend. Hug a loved one, smile more – it’s surprising how many people smile back
• Take a walk or exercise. It does not have to be very many minutes at all. But the more you do it the better you will feel.

My son has had a particularly difficult time over the last four years. He hit puberty and started to notice his thought processes were different to that of his peers. He felt pressured by the expectations of others with regards to his ability constraints. People assume he is able to do one task because he is very good at a more difficult one. But sometimes, the most simplistic tasks are impossible for him to fathom without a more supported approach. Of course, the global pandemic in the midst of all that didn’t help matters. He was diagnosed with autism, social anxiety and communication disorders in October 2020 at the age of 16.

He is often mute and finding the right fit for therapy was arduous and stressful for him. But during the course of time, his persistence in his quest for self-improvement and wellbeing superseded any negative thoughts he was having. He was sometimes suicidal and has self-harmed; however, he has worked hard to overcome those feelings and has obtained life skills in order to deal with them should they arise.

Part of his therapy included the PAN (parents of children with additional needs) Understanding Anxiety course with CAMHS. Whilst this was not a course attended by himself, it gave us as parents the tools and information to manage his anxiety and support him better at home. We are part of his MDT after all.

Whilst talking therapy was not a successful route for my son, which took a toll on both him and the whole family, he did have a better outcome when we shared his concerns with his case worker over the phone randomly as they arose. He would be listening along and whispering questions, nodding and giving indications of disagreement if and when he felt the need to. But mostly he listened and was reassured. We worked together and managed to build up a level of communication where I could advocate for him during sessions with the psychiatrist. He would attend appointments with me and give indication that he was in approval of what answers I would give and disapproval if necessary. Occasionally he even participated in the conversations. We would always ask for a week or so processing time if he was prescribed medication or had any decision to make. He has often made the choice to try without medication at times and has had some success with it too.

I’m so proud of my son as he has gone on to share his story with the help of others (yes, he proofreads anything I publicly write about him) in order to help those who have followed in his footsteps. In the hope it will give his journey purpose and make their journey to recovery from mental ill health less arduous and stressful.

He has also supported his friend during mental health crisis, sourcing the correct help in a timely fashion and speaking to an adult and the police to safeguard his friend - which he finds extremely difficult, especially in stressful situations.

We have both had some very dark times, but there was always hope even if we could not feel it!

So, with that in mind, hold on in there and share my hope if you can’t muster your own, because despite all we have been through, I’m full of hope for the future of services, support and recovery success for all children and young people and their families - whatever their personal needs are. This is despite all of the things we have been through maybe because of it. We are evidence that you can come through the storm and be even better and stronger than before.

People care. I care! You are not alone!

What do we mean by wellbeing, and why is it important as a carer?

After the difficult year of 2020, the impact of COVID-19 and lockdowns has put our health and wellbeing to the test. Whether you worked throughout or were at home looking after those you care for, the lack of socialisation and connection has had impact on us all, including myself.

However, now that life is getting back on track and we can enjoy coffee with friends or that weekly trip out, it’s important that we all take care of ourselves, now more than ever.

For most of us, our 'wellbeing' has been a common theme we’ve heard again and again throughout the lockdowns; however what does 'wellbeing' really mean? The term is generally used to describe a holistic view of health, although the definition according to the Oxford-English dictionary is ‘the state of being comfortable, healthy or happy.’ The idea is that good levels of wellbeing can help us feel motivated, engaged and feel that life is more balanced. This helps us with resilience and our ability to bounce back from daily challenges.

Taking good care of ourselves helps us not only to perform to the best of our ability but also ensures that we are better able to support those we care for. In my role as parent/carer peer support worker, I have lived experience of being a carer to a loved one with mental health difficulties, so I know this first-hand. My role in LPFT now involves supporting parents and carers in our CAMHS service and a huge part of this is reminding carers that their wellbeing is important too.

I hear many stories from carers about their caring role, but the words from one carer recently really stuck with me, resonating with my own experiences and affirming the value of supporting parent/carers’ emotional wellbeing.

Whilst speaking about their caring role they also talked about what was important to them in their role. They discussed what they saw as the three most important aspects of self-care:

• Being Heard - having the opportunity to talk and be heard, really heard, was a priority. For someone to say ‘I hear you, and I’m here for you’.
• Connection - connecting, sharing with others within the boundaries of a safe space, empathising and validating.
• Spirituality - being spiritually connected, not necessarily through religion but having connection to the universe and love and access to continuous love and support.

They spoke about what gave them strength during the more difficult experiences of their caring role, using the analogy of a ‘batman suit’ to describe the value of protecting and looking after yourself as a carer to help ensure yourself from becoming ill, and therefore unable to support that person/loved one.

After, I reflected on these words. I, as a parent/carer, too wanted to make everything better for my loved one at that difficult time. I remember feeling completely helpless and became consumed with it. I wasn’t eating or sleeping properly and I was waking up in the night feeling overwhelmed and sick with worry. It affected me hugely.

Becoming so overwhelmed, did that help them? Did my lack of self-care make the situation any easier? On reflection, no it didn’t. Maybe looking after my own wellbeing more and having someone to listen, really listen, would have really helped me at a time I really needed it. That is why I love what I do. Listening to other parents/carers in that same situation, showing them we don’t always get it right but learning from our experiences and working through our journey together, giving us all hope for the future.

Below you will find links to additional information and resources that you may find useful.

• Check out the 5 steps to wellbeing on the NHS website
• Lincolnshire Recovery College
• Lincolnshire Carers
• Lincolnshire Parent Carer Forum

– By Julie Graves, CAMHS Parent/Carer Peer Support Worker

Carers Education Group feedback

After Jools presentation and informative reflections at lasts nights Carers Education meeting, it reminded me just how important this group is. When you have been part of something for a while there is the danger of taking it for granted and not fully appreciating what is being provided.

I want to thank you for setting this group up and working so hard to get all the speakers you do. Every person who gives up their spare time to speak brings us as carers closer to understanding the health care, social care and mental health landscape we are trying to navigate. Which equips us to better support our loved ones and manage our own lives and wellbeing. 

It also shows us just how committed and passionate you and these people are in your roles. Which inspires, motivates and give us hope, especially when we are facing challenges in our caring role. 

It was so inspiring to have Jools speak yesterday evening. To have the opportunity to learn and understand in more detail how Mental Health is treated and to be given the insights to look at it in a different way. I think those particular conversations are vital if we are to understand and support our loved ones fully. 

Knowledge and education are so vital to us growing in our roles as carers but also growing as people. It's a privilege to have these opportunities.

- Sash Bazley, Carer

If you would like to find out more about the group, please email lpft.carers@nhs.net.

LPFT's Carers Council feedback

I can’t tell you how long ago it was that I was asked if I wanted to join the Carers Council. When you’re a carer, the days seem to merge into one another and time seems to lose much of its meaning, but I do remember wondering what exactly the Carers Council was and whether there would be any real benefits to being a part of it.

In my experience, most committees or groups involve lots of talking with very little to show for all the hot air but I knew that was a generalisation and the opposite can also be true so I thought about it some more.

My husband was diagnosed with Young Onset Dementia in December 2017 and it wasn’t a pleasant experience. In the aftermath of the diagnosis there was no support and for a very long time we struggled through, picking up information as and when I discovered it. I decided that being involved in something like this might help other people avoid what happened to us and I also thought it might give me something to occupy my brain, which wouldn’t be a bad thing.

"I said ‘yes’ then and prepared for the first Zoom meeting with no expectations whatsoever but thought, if nothing else, I’d meet new people and find out new information. 

So what can I tell you about the council? Is it somewhere people go to talk but not achieve? Is it something that meets for the sake of meeting and ticking boxes? I’m happy to tell you it’s neither of those things.

We meet once a month and have the dates of those meetings up to and including June 2022 so we can plan and try to keep diaries free. Information is sent out at least a week before each meeting, an agenda is set and stuck to, guests are invited to talk to us about relevant services, our views are taken into account and, most importantly, any decisions taken at the meeting are acted on before the next time we get together. 

In the months I’ve been a member of the council we’ve produced leaflets of our own, we’ve had input into information given out by services, we’ve given our opinion on existing services and I really feel we’ve made a difference to the experience of service users and carers. I’ve also learned that I’m not the only carer in the world, that there are others living a very similar life to mine.

One of things that’s really stood out for me is the way the meetings themselves have changed in response to the needs of the carers involved. Until very recently we met from 3pm to 4.30pm once a month, but frequently there were only two or three carers taking part. Then came a request for an evening meeting so we tried it and discovered that far more carers could be involved if we held the meetings in an evening, so they were set for 6pm to 7.30pm each month. At the first of these there was a discussion around how difficult it was for us to be ready so early and the immediate response was to change the times. The plan now is to meet 6.30pm to 7.30pm. The meetings will be shorter but the council will be far more accessible and give many more of us the opportunity to make a difference.

- Written by a Carer involved in the Carers Council 

If you would like to find out more about the Carers Council, please email lpft.carers@nhs.net.