"Acknowledging patients' communication preferences and barriers"

About: General practices in Ayrshire & Arran

(as the patient),

I am writing about a visit I made to my GP about 4 months ago. It was my first (and I suspect my last) appointment with them as I had recently moved from another surgery. I will admit that I generally struggle with visiting any GP, and, if I can afford it, I will try to go privately as I usually find that the environment is infinitely less stressful. I am autistic and I experience generalised anxiety, but more so when I am kept waiting significantly longer than my appointment time (which happens every time I visit an NHS GP) in a very busy, noisy and overheated waiting room. 

Firstly, the appointments system at this surgery does not allow for appointments to be made in advance - they can only be made on the day. Where possible, I prefer to have someone else with me at appointments as it helps to offset my anxiety, and they communicate on my behalf. It is not possible for me to get someone to attend with me with only a couple of hours notice, so on this occasion I was forced to attend alone. It did not go well.

I had reached the stage where I was struggling with anxiety to the point where I could not control it using the techniques I had learned as a psychology patient. When I reach this point and I recognise that I might be at risk of harming myself, I know that it is time to visit the GP and ask for some short term medical support. Miraculously, I managed to use the telephone to arrange an appointment, and made it to the surgery. I managed to keep it together while I waited 45 minutes past my appointment time in the waiting room in which there were many newborn babies crying as it was clinic day. Therefore, by the time I made into the consultation room, I was very upset. I found it difficult to communicate my anxiety, I was angry and I just wanted her to give me some medication and let me leave. 

I had only very recently been discharged from the Community Mental Health Team and did not want to be re-referred. I did not want her to prescribe me daily anti depressants - I don't appreciate having to pick them up every week, or having to remember to put in prescriptions all the time for a condition I am determined to try and manage without medication for as long as I can until I reach breaking point. I did not want her to give me medication I had had before, either. What I really wanted was for her to listen to what I was saying. I wanted to be able to tell her that occasionally I only need some PRN anti anxiety medication to get me through a difficult period, but the anxiety made it difficult for me to communicate this. 

When I asked the doctor if she knew I was autistic, she said yes. And then she didn't speak to me for the rest of the consultation. It felt like a diagnosis of autism gave her the right to dismiss me out of hand. I am used to this attitude - it was worse when I was  wrongly labelled with borderline personality disorder - but it still hurts.  She reluctantly printed a prescription for a week's worth of medication and handed it to me. I have managed to make that week's worth of medication last me through 4 months by only taking it at times of severe anxiety. I am about to go through a period of transition, the anticipation of which is causing me some anxiety already, but I know that if I reach the apex I won't be able to seek any kind of support from a GP unless I manage to find some money to go privately. It is little wonder that many people, including me, self medicate their anxiety using other means which might be more detrimental to their physical health in the long run. 

I used to work in social care, so I know that it's possible for anxiety medication to be prescribed on a PRN basis. With the right safeguards in place (as I am aware that I am not to be trusted with large amounts of medication), there is no reason why I can't also be prescribed this medication PRN. 

I am perhaps not always hugely articulate when I am forced to speak through my anxiety, but, as you can see, I am highly intelligent and I can communicate beautifully by writing. It would be my hope that this post might alert GPs to be more respectful of the diversity of their patients' communication preferences and barriers. I didn't make an appointment expecting it to be so difficult, but at least I know never to make another one.    

Responses

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

picture of Eunice Goodwin

Dear ncrbrts,

We have let you down at so many points along the way and I am so sorry.

I can only imagine how difficult it was for you. I suspect that it is only possible to fully understand how this feels and how it impacts on you if you also suffer with anxiety.

I wonder if you are aware of the advocacy service. There is one in each of the ‘three Ayrshires’. A member of the advocacy service can attend appointments with you, help you to get your points across and be there to support you.

The details for North Ayrshire Advocacy service are;

70 New Street, Stevenston, Ayrshire KA20 3HG
Tel: 01294 608663
Email: info@aimsadvocacy.org.uk

I appreciate that your preference is not to go to the GP at all, but there may be times when that is not an option for you so I really hope we can look at ways to help you to be able to attend your GP without such distress. I am sure we can learn (from you) how we can help to prevent this or at least, minimise the impact on you. To do that, I wonder if you would be prepared to email me some details such as your name, address, date of birth, the GP practice you previously attended and the one you are now registered with.

My email address is eunice.goodwin@aapct.scot.nhs.uk. My phone number is 01563 826222 should you feel you want to contact me this way.

We do not want you, or others feeling this way, so I hope we can look into this with a view to understanding and helping for any future visits.

Best wishes,

Eunice

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Update posted by ncrbrts (the patient)

I was referred to the advocacy service when I was first diagnosed. It was too difficult to coordinate with the worker I was assigned because they didn't work full time and would sometimes take several days to pick up email (I avoid phone calls where possible), so I stopped using the service about 2 years ago. I now rely on my mother to accompany me if I need someone but she works full time and can't always get time off short notice - and most definitely not with only a couple of hours' notice.

I will email in due course.

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