Earlier this year Muscular Dystrophy UK launched our new ‘Here for You: Mental Health Matters’ project. The project has been set up to ensure that individuals and families affected by muscle-wasting conditions receive better support with their mental health.
To help lead this work we have recruited an expert steering group of consultant neurologists, care advisors, psychologists, palliative care specialists and individuals and families affected by muscle-wasting conditions.
Rianna Davis (pictured) has Myasthenia Gravis and below shares her experiences of mental health services in the UK.
The first time I needed mental health support was after university in 2015. I was very depressed and anxious and had been for the previous three years. I was frustrated as I had explained I was struggling with travelling especially on public transport, I was too anxious and having panic attacks, however they wanted me to travel to Springfield hospital for counselling. I asked if they had patient transport (I was hoping as its nhs and an appointment they would have access to this like other hospitals I am under) unfortunately they didn’t. Finally they agreed a counsellor could meet me at my GP surgery. The counselling helped enough for me to be able to travel independently, go out with friends and socialise with people again.
As of this year I have needed support again as my anxiety was back and worse than before, I was not sleeping and was very stressed and depressed. I had been admitted twice because my illness was so aggravated by my mental health I was having breathing issues and extreme fatigue. It was suggested I joined group sessions for overcoming worry (at the time I didn’t realise it was just CBT).
I went to my local Improving Access to Psycholgocial Therapies (IAPT) centre. Upon arrival at the centre I faced a whole host of issues and frustration. The main door buzzer is hard to reach, you press it and the door unlocks for you via reception, no one interacts with you… Its massive glass doors, impossible for a disabled person with limited upper body strength to open alone and not possible to use chair to push door open without smashing glass, luckily two ladies at the time turned up and held it open for me. Then I was faced with a through floor lift. It had a small steep slope in front of it so I had to force my body to learn forward to reach the button, as wheelchair is basically tilting back on the slope, meaning gravity is pulling me backwards and forcing my muscles to work more.
It took numerous attempts to reach to press it then I waited for the doors to open realising you have to manually open the door. Fighting the door, reversing back and forth and on a slope made it difficult. Once in I had to dismantle the front of my chair and hand to the receptionist keep my arms and legs extremely close to the chair, which was very unsettling for my myasthenia and my body began to spasm and tire.
When I finally got to the room it took some slow driving to manoeuvre in and even when inside with about 10-15 of us I felt closed in, it felt like my wheelchair had taken up so much room and I hate feeling like I am in the way. I explained to the psychologist that CBT group was not for me I was looking for something else like counselling, they took my name and number and said someone would contact me to think of another solution to help me. I left more anxious than when I had gone in and eventually was just in tears out of frustration.
Following this experience I attempted numerous times to gain a referral to 1 – 1 counselling, however I always felt like I was chasing them and getting no where. I’m at the point now where I do not feel I should have to chase them for support when I have already so much stress to face, so I have not contacted them again.
Muscular Dystrophy UK’s ‘Here for You: Mental Health Matters’ project has been created to ensure that experiences such as Rianna’s become a thing of the past when people with muscle-wasting conditions need psychological support. The project aims to:
- reduce waiting times for people with muscle-wasting conditions to access psychological support
- increase the proportion of people with muscle-wasting conditions able to access psychological support
- ensure mental health workers have an increased knowledge of muscle-wasting conditions and their impact
- ensure all counselling venues are fully accessible and easy to access for people with disabilities.
To find out more about our Mental Health Matters project and to get involved, get in touch with Lloyd Tingley at firstname.lastname@example.org or on 020 7803 4804.