Accessing Health Care

I’m bipolar as well as autistic and I get one half-hour appointment a year with a mental health nurse. I get the impression though that it’s more to cover my gp surgery’s back than anything else and I’m still waiting on things to be actioned from the last meeting 6(?) months ago.

Thank you, Autononmistic!  I'll follow those links.

That's a very good summary there for me.  There are indeed big issues about the education of medical staff.  Frequently they do not know or understand what "reasonable adjustments" need to be made; even fail to grasp why they are needed.

There are also some very serious issues within mental health services which are a whole discussion in themselves.

Where I think you've hit the nail on the head with respect to services which can improve the NHS offer for autistic people is in the advocacy, I think.  Much of our issues could be over come if someone were making the appointments for us to arrange the reasonable adjustments ahead of time, facilitate the communication in appointments and negotiate for us when we just aren't coping in these environments.

That, I think is the missing provision.  I'm going to dig more deeply into those links now.

Yes indeed.  It's hard enough to being one GP on board with how to adjust for our needs.  Then, if it's suddenly someone else we have to re-educate them all over again just when we are poorly and not exactly up to that.

Absolutely, even mental health don't recognise autism when they see it and many get inappropriate care as a consequence.

There is indeed, in addition to services, a bit need for the training of professionals

MrSolo said:

I can't use a telephone and have been denied access to some services as a result. When I told the mental health team I couldn't use a phone, they said "it'll mean a much longer wait." When I contacted them several months later it turned out they hadn't bothered putting me on the list at all. I've told my GP surgery multiple times that I can't use a phone and yet they still try to call me or direct me to call them.

That's absolutely appalling.  I'm so sorry you've experienced that.  

Great points and summary!! 

Not bored at all, please keep posting about these issues. The autistic community needs people like you with such a passionate dedication to improving lives.

I would echo many of the comments made here already:

1. Communication other than by phone

My practice had a perfectly functioning online booking system for making appointments. At the start of the pandemic it was taken offline and as far as I know has not been brought back yet. The 8am telephone scramble is stressful enough for non autistic people and impossible for many autistic people. Like others I will suffer for a long time rather than have to make a phone call.

2. Clear communication

Anxiety will reduce if an autistic person can fully understand what is going to happen and when. Sadly this does not happen in most instances and the autistic person is expected to repeatedly phone to chase things up, get test results, etc.

It should be recognised that autistic people can struggle to communicate by speech in a healthcare setting. Written notes to give to the GP should be accepted without question and actually read. The GP should not read questions aloud off their screen but allow the autistic person to read themselves and have sufficient time to consider their answers. Double length appointments should be offered as standard.

3. Training

This is a big problem. There should be one GP in each practice who is considered the lead on autism and commits to keeping fully up to date. Autistic patients should be able to choose to see that GP. That GP should also have enhanced awareness of other common comorbidities that occur in autistic people (eg EDS, POTS, etc)

4. Mental health

Commissioners should enable autistic people to access therapists specifically trained to help autistic people with common mental health problems such as depression and anxiety. Standard therapies, even with adjustments, do not help and actually cause harm. These issues should not be just dismissed as 'part of the autism' as a reason to wrongly decline mental health referrals. Far too often autistic people have to reach crisis point before they can access any help.

In this area too there is currently far too much reliance on the phone as the only method of communication to access mental health services. Initial assessments are all done by phone. The crisis support line on my region operates by phone only, effectively excluding many autistic people from accessing the service at all.

5. Advocacy

Autistic people should have access to advocacy support within the practice if they need it. It could be a specially trained nurse or a social prescriber. They could help advocate where communication problems arise and be aware of how to help if the autistic person goes into meltdown or shutdown. These staff could actively reach out to autistic people who do not access primary care and work with them to reduce whatever the barriers may be.

In terms of your meeting referring to existing research studies on this would add a lot of weight. Autistica have one ongoing with Newcastle University and their published findings so far highlight issues repeatedly commented about on here. They are recommending a comprehensive annual health check for all autistic people by 2030 and there is no reason why this could not be commissioned much earlier. 

https://www.autistica.org.uk/our-research/research-projects/health-checks

https://www.autistica.org.uk/news/health-checks-plan

https://www.autistica.org.uk/downloads/files/Health-Checks-Plan.pdf

https://www.autistica.org.uk/downloads/files/Health-Checks-Workshops.pdf

I was also misdiagnosed  by a lot of people, including several psychiatrists, psychologists, GPs, etc and across 3 countries- UK, Germany and Luxembourg. I was even inpatient for 8 weeks with lots of therapy sessions where I expressed how 'different' I felt etc. and noone realised. At school noone noticed either, probably as I was doing well academically. 

Definitely needed.

It is only when reading my GP notes sent with the request for an autism assessment, that I realised how many flags there were for autism and how seriously I had been misdiagnosed over the last 30 or so years, not just by GPs but by psychiatrists and other mental health professionals. 

They also all need training in what interventions might be effective.

Well, I would like people within Mental Health teams to understand that socialising is difficult and stressful. Yes I am severely depressed and anxious but dashing off to see groups of people may not be the best thing for me right now.

I can relate. There is very little the doctor can do for most of my issues. I used to have really unrealistic expectations- first about my ibs and digestion and eating issues. And then hoping I could get some support when I had the autism diagnosis. It helps to know what you can and cannot expect from a GP. It's a shame there is not better support for improving quality of life. I think doctors are very good at saving lives in the immediate, but when it comes to long term health and well being and issues that can be managed with lifestyle changes, reducing stress and other strategies, then they are not very good. In their defence, GPs just don't have the time to properly address such issues. But there should be more services like that. My dietitian was invaluable but the university funded that and then later my family and I paid for sessions myself. I could never have gotten  to where I have now without regular support from her. I did reach out to NHS dietitians and they weren't bad but it just wasn't individualised at all and not enough contact time/ no option for regular sessions. I needed weekly, then once every 2 weeks. 

If i am struggling and not coping, i have emailed or written to the doctor. If we find this form of communication better and less stressful then we should do it. Time for change ️ In the past on occasions i havent felt listened to. It has felt like the doctir has already made a decision on what is "wrong" . I rarely need to visit these days, there is nothing they can do x

Yes, I live in social (retirement) housing and whenever I need a repair they normally just say between 8am and 6pm.

sounds good. Actually what I also find really stressful is when they do not specify a time for phone consultation with GP. It has happened to me that they say- we' ll call you at some point on that day, which is really stressful. 

Yes, I get results of tests etc by text from my doctor which I also far prefer

I think being able to email would be great. My GP surgery does have an online consulting tool but they keep changing when it is accessible and it tends to be only be accessible in morning or afternoons during working hours which makes it quite difficult to fill out when still working. And as the questions on the form can only be seen when the form is available, it's hard to write the answers in advance (plus there are quite strict word limits...). 

1. I have written to the doctor or sent an email on occasions. I find it easier than speaking. I feel better afterwards. I encourage everyone to do this if it helps x

When I am ill I go as white as a ghost - I’m pale skinned to start with. I once went to A&E with a suspected broken rib and the triage nurse took one look at me and found me a cubicle straight away.

I have tried writing things down but most of the time I then still feel too selfconcious to say them and end up not saying what I should. I also think my desire to please people (and saying what I think people want to hear is one of my masking strategies) gets in the way and I often downplay my problems... 

I can relate a lot to not feeling able to ask for time off. I was extremely lucky in one of my worst burnouts that I came across a GP who recognised the urgent need for me to take time off without me having to say anything. I think he may have saved me. I was really unwell. However sadly the same GP got quite dismissive even angry (that someone had suggested it) at the idea that I could be autistic.