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"Being let down by the Pendine CMHT"

About: Pendine Community Mental Health Centre Royal Hamadryad Centre

(as a service user),

I have had very obvious ADHD all my life, but I didn't get a diagnosis until I was in my forties, after a long fight with the Hamadryad CMHT. I'm 53 now. I moved house in 2018 and now fall under the Pendine CMHT. In the summer of 2019, I had an abrupt menopause when I had my ovaries removed. I've read since that there's a strong link between oestrogen and ADHD. It made sense. Three months after the operation I became depressed and since then the quality of my life has been virtually nonexistent.

I always had a huge problem with executive function, but now I barely function at all. My husband cooks, cleans, shops and does most of the laundry while running his own business. I lie in bed all day, overwhelmed with guilt, shame and depression, gripped by the worst ADHD paralysis imaginable. In 2021, I began reaching out to my GP and after another struggle, got referred to the Pendine Centre. I had an assessment over the phone in April '22. I poured my heart out, explained that I desperately needed help and described my quality of life, or more accurately, my utter lack of it to them.

The following month I had the results of the assessment, also by phone. They told me that they were not prepared to give me medication because I was on HRT. I explained that I didn't need or want to be on HRT and that I found the side effects unpleasant, the only reason I was taking it was that it helped a little with my ADHD. I said I would much prefer to be taking ADHD specific drugs. They told me not to come off HRT and that they would still not give me medication. They refused to discuss it further. I asked about therapies, CBT etc.. They said they had no therapy for ADHD in Cardiff. None, not even counselling. I was reeling at this point. They asked if I would like some web resources. They gave me a list of articles and websites, not a single one of them was ADHD specific. Not one. I sobbed my heart out for four days after the phone call.

I feel Cardiff needs more help for people with adhd and more staff training.  They need Cbt training which is geared for adhd.  

I was, and still am, absolutely devastated at their refusal of help. Staying in bed all day playing games on my phone, tablet and laptop just to get enough dopamine to get through each day is destroying my health, my marriage, my friendships, even my faith. My teeth are rotting in my head because I can't motivate myself to clean them regularly. I'm constantly depressed, often suicidal and I really don't know how I will keep going. It took me six months to gain the courage and motivation to phone them to make a complaint, that's how bad it is with me. They told me I had to make it in writing. It's a testament to how bad my mental health is that that is just too hard a job to contemplate. I feel so badly let down and abandoned. Today I begged my husband to give me permission to take my own life. It was probably the most distressing thing he ever experienced. Please, please could you help us? 

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Responses

Response from Michelle Fowler, Patient Experience Lead, Cardiff and Vale University Health Board 2 years ago
Michelle Fowler
Patient Experience Lead,
Cardiff and Vale University Health Board
Submitted on 14/03/2023 at 17:15
Published on Care Opinion on 15/03/2023 at 07:08


I am so very sorry to read about your experience and we would urge you to contact our concerns team so that we can investigate.

The Concerns Office is open Monday to Friday between the hours of 7.30am and 4.00pm Mon/Tues/Thurs/Fri and 7.30am -6.00pm Weds. Please call on telephone number 029 21836318 during office hours if you wish to speak with a member of the Concerns Team. You can also email the team at concerns@wales.nhs.uk

Kind regards
Michelle Fowler

Patient Experience Manager

concerns@wales.nhs.uk

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Deadsquirrel (a service user)

Thank you so much for replying! As soon as I read your response I phoned the number. I find speaking on the phone much less daunting than writing. The person I spoke to was very kind and patient. I hope to hear from them soon! Thank you again!

Update posted by Deadsquirrel (a service user)

I followed the advice given and contacted the Concerns Office who arranged an appeal process for me. I received a phone call from them to discuss my side.

The appeal went ahead and I lost. I received a detailed report which to me showed that they hadn't even considered my complaint or the new evidence I had given them, they had just looked at my old notes and, surprise surprise, had come to the same conclusion again.

I spoke to the office again and voiced my dismay and was told I had to appeal again and that there was a time limit. Well if you've read my original post you'll be able to see why this was such an issue for me. I wasn't able to do it.

I feel utterly abandoned, hopeless and desperate. I can't afford a private psychiatrist. I feel suicidal due to lack of options. My heath is failing because I'm stuck in bed most of the time. My quality of life is so low and my husband is suffering so much trying to run a business and take care of me.

Response from Michelle Fowler, Patient Experience Lead, Cardiff and Vale University Health Board nearly 2 years ago
Michelle Fowler
Patient Experience Lead,
Cardiff and Vale University Health Board
Submitted on 23/08/2023 at 15:44
Published on Care Opinion on 24/08/2023 at 08:41


I am so very sorry to read that you are still having such a difficult experience and would urge you to contact our concerns team again to request a meeting with the clinical team to discuss your ongoing health concerns. May I also recommend that you contact your GP or current support team to discuss your health and wellbeing.

The Concerns Office is open Monday to Friday between the hours of 7.30am and 4.00pm Mon/Tues/Thurs/Fri and 7.30am -6.00pm Weds. Please call on telephone number 029 21836318 during office hours if you wish to speak with a member of the Concerns Team. You can also email the team at concerns@wales.nhs.uk

Kind regards
Michelle Fowler

Patient Experience Manager

concerns@wales.nhs.uk

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
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