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I feel dismissed

Posted By cafekk55

"I feel dismissed"

About: Edinburgh Health & Social Care Partnership General practices in Lothian

(as the patient),

I approached my GP regarding ADHD symptoms I have been experiencing for years (Over 16 Years ), which have been continually dismissed and then labelled as another Mental Health Condition.

GP gave me ASRS-v1.1 and WFIRS-S, and then upon discussion with my GP a week later, he said that the ASRS-v1.1 showed symptoms which are highly in line with ADHD. 

The WFIRS-S showed areas where these symptoms affect my life with significant difficulties in 4 different areas of life. My GP referred me to the Community Mental Health Team, where I received a letter stating, that there was not enough evidence of significant difficulties in functioning in more than two areas of life. 

No phone call, No assessment, No appointment. I feel dismissed again as even though there are issues that I'm struggling with, and I have been going to the GP for years about different issues. I got offered zero support. This decision is made by two pieces of paper. One of which I feel makes zero sense and asks that a number be circled that best describes how your emotional or behavioural problems have affected each item in the last month. But when you look at it, there are no numbers on the assessment so you are left to figure it out!

Yet again, I feel dismissed with no person-centred approach. 

How do any of these approaches represent Care, Compassion, Dignity,  Respect, Quality or Openness, Honesty or Responsibility?

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Responses

Response from Claire Withnell, Patient Experience Officer, Patient Experience Team, NHS Lothian last month
Claire Withnell
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 18/03/2024 at 11:46
Published on Care Opinion at 11:46

picture of Claire Withnell

Dear cafekk55,

Firstly, I want to thank you for taking the time to share your story on Care Opinion. I am saddened to read the challenges you have experienced over the years trying to see the right professionals and that as you state you haven’t experienced patient centred care. It sounds a really difficult time which has resulted in you feeling dismissed and unsupported.

I am sorry that I am going to further signpost you for answers, which is not what I want to do. I understand that not having answers and support has been a key part of your experience, but unfortunately, as most GP practices within NHS Lothian are independent contractors, NHS Lothian’s Patient Experience Team do not oversee them. When your story is posted anonymously on Care Opinion, I am not informed of which GP practice your story is about, so I am unable to pass it on for the practice to read and identify any areas of learning.

I would advise you if you would like your experience to be investigated to contact the Practice Manager directly who may be able to provide a response to your concerns. If you wish to remain anonymous, can I advise you to pass the name of your GP practice on to Care Opinion, who will be able to pass it on to myself and I will contact the GP practice with the details of your story.

Thank you once again for sharing your experience. I wish you all the best going forward, and I hope you will be able to gain some support and the impact on your day-to-day life will be reduced.

Kind regards,

Claire

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Update posted by cafekk55 (the patient)

Thanks for the response Claire

First of all thanks for acknowledging my struggles of trying to get support.

I will be raising this with the practice manager but even after following the referral guidelines for ADHD assessment found on RefHelp the Neurodevelopmental clinic @ CMHT refused this referral as they stated there was not enough evidence of significant difficulties in functioning in more than two areas of life.

The issue I have is the way my referral was handled doesn't seem to be in line with NICE guidelines for ADHD, and I shouldn't have to be the one doing the running about to try and get it accepted.

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian 3 weeks ago
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 02/04/2024 at 12:43
Published on Care Opinion at 12:43

Dear Cafekk55,

I just wanted to reach out following your additional response. I echo Claire's words and want to thank you for sharing your story and I was sadden to read of your experience. It sounds an incredible difficult and stressful time for yourself.

One option you may wish to consider is contacting Patient Experience Team who will be able to discuss if you wish your concerns to be investigated further. Please contact the team by email on LOTH.feedback@nhs.scot or by telephone on 0131 536 3370 (9-2pm).

Thank you again for sharing your story,

Mariska

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