"ADHD referral after private diagnosis"

About: General practices in Greater Glasgow & Clyde Riverside Resource Centre

(as the patient),

After many years of wondering I finally went for a private ADHD diagnosis in Mar of 2020. For someone with ADHD often getting the focus and motivation to pursue this can be the first stumbling block and then the lengthy waiting times. I was lucky enough to be able to fund this myself using limited resources available.

My NHS GP could not accept shared care without NHS confirmation and put me forward to riverside CMHT in Glasgow for review -  So in the midst of a pandemic and feeling myself rapidly deteriorating I pursued private treatment which is costly and difficult as NHS can't advise.

After 4 months - it is now July 2020 I phoned to understand where my referral was to be told I had been rejected back in April 2020 and my GP would need to re-refer. I phoned my GP who stated very clearly there last communication was that I was on a waiting list. I phoned riverside, it appear there was a mix-up and the confirmation letter did say I was on list but the review meeting held had said I would not be seen.

A call back from Riverside today confirmed that I was not accepted for an appointment , that instead they had decided to advise my GP on treatment in April but that indeed wrong letter was sent but now I was back on the waiting list to be seen for ADHD review again when ADHD appointments started to open up.

 Meanwhile I have had one trip to hospital after severe chest pain, a 4 day wait time for a response from private service on what to do with medication and 4 phone calls.

 I have now asked if someone can explain why in April it was decided I would not be seen but they would advise my GP on treatment protocols but now in July I am back on waiting list to be seen by another consultant.

I appreciate the COVID pandemic is one of the most stressful situations we have faced and while everyone I have spoken to has been pleasant and trying their best but there are clear issues here around private and shared care for ADHD  which are making things unnecessarily challenging and increasing workload for everyone involved.

I am grateful for the help I have gotten from my GPs and thankful for the nhs but is it any wonder that people don't come forward for ADHD review ? or that they try to go private if they can afford. It's even harder to accept this as by now I have already accrued quite a bill for the NHS with hospital visits and GP calls not to mention the 100 quid a month I have had to find since March to fund medication which has changed my life , I am sure if I had asked for anything else - antidepressants, anxiety meds, beta blockers I may have gotten them given my history! but the one thing that has already made a huge difference I can't get. Now faced with coming off medication as I can no longer afford to fund, worried what withdrawal my trigger? Severe depression? who knows not me.

I wish I could have emailed this to someone but I couldn't find any email addresses - again for someone with ADHD - executive functioning . auditory processing deficits on phonecalls it can be very helpful to see things written 

Responses

Response from Rachel Pyle, Patient Experience Project Manager, Patient Experience Team, NHSGGC 3 weeks ago
Rachel Pyle
Patient Experience Project Manager, Patient Experience Team,
NHSGGC
Submitted on 20/07/2020 at 09:41
Published on Care Opinion at 09:41


picture of Rachel Pyle

Hello GlasgowPatient2,

I am so sorry to read of your experience and the upset and worry it has caused. You have raised some concerns we would really welcome the opportunity to look into in more detail for you. As this is a public site without personal details, it would be really helpful if you could contact Rachel.pyle@ggc.scot.nhs.uk with your personal information, such as name, date of birth and CHI Number if you have it to hand, to allow us to investigate for you.

Best wishes,

Tracy,

Service Manager

  • GlasgowPatient2 thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too

Update posted by GlasgowPatient2 (the patient)

Many Thanks Tracey I will be in touch. Again just to stress - All staff have been polite and kind to speak to - Obviously the confusion around the referral and the miscommunication was stressful but I do understand that the service is facing a record number of referrals given the context of a global pandemic! It would be helpful if there was a way to communicate on email with services. As in the end it was 6 phone-calls to confirm I am now on the list and will be seen when normal appointments resume .........

It is frustrating for me and I am sure extra work for them that in this case a private diagnosis cannot be accepted and instead needs to be completely revalidated adding more work and waiting times for all involved and also more complication regarding care given I am now taking a controlled substance out-with NHS -My choice but again there was very clear need for me to get treatment at the start of the pandemic and my GP was unable to accept the diagnosis based on advice from NHS on this. if I had thought something else would help I would have asked - antidepressants etc but I already knew from previous experience this was not the treatment that would help me.

I do not understand why NHS won't accept shared care for ADHD. It's not a choice to get treatment for many it's only the option to be able to function. If I was diagnosed with depression privately I don't think the NHS would even question writing a script for medications. As it is, it is possible to get this after a 10 minute triage at the surgery. In the same way ADHD - which took multiple screenings and interviews and involvement from family - it's not a choice to get treated it's as important as getting treatment for depression. In one case your serotonin levels are so low you can't function and in the other your dopamine and norepinephrine levels are too low for your brain to work. Depression is widely understood and medication given without question and the other is not well understood and correct treatment can often take a lifetime or for many never comes.

Surely it would alleviate the stress on already overworked services if guidance and understanding of Adult ADHD was updated and streamlined. What is even more frustrating is that I am also aware that some GPS do accept at their discretion despite NHS advising against. Again I feel the guidance from the NHS to GPs on this should be clear and the approach consistent across all services! Also think that there should be acceptance of private services who do this as many are specialists in the field.

My hope is that one day there will be a clear medical diagnostic test for brain chemistry and the stigma of these conditions and taking medication can be removed. Insulin for a diabetic, Thyroxine for a thyroid - sadly no blood tests for ADHD or Depression just now but until then we should remove barriers to treatment and allow services to work holistically across shared care and nhs

Update posted by GlasgowPatient2 (the patient)

On inconsistency of GPs accepting shared care see this story - Please NHS can't it be like this for everyone private or not?

https://www.careopinion.org.uk/704877

Private diagnosis is not the enemy, it is merely people trying to get access to the help they need from trained specialists for what is a poorly understood condition in Adults. Adult who never had the chance to be seen as children. Adults who as children were branded as lazy, distracted, day dreamers, slow, chaotic, aggressive, badly behaved, too sensitive, reactive, anxious. Left to struggle. Left with labels that don't fit.

GPs and CMHT do an amazing job, we are lucky to have them, but they need more support and guidance when it comes to this - imagine asking a patient with confirmed thyroid issues to wait two years for meds? Why is this any different?.

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