Any advice on pushing for a neuropsychology referral?

[Suwariwaza]

I've just heard that I've been knocked back for my referral. Is this a common experienc? Does anyone have any advice for how to argue for it?

I think it may just be that my GP didn't handle the referral well. First of all, he referred me to the wrong clinic (memory clinic), when it should have been neuropsychology. They pointed this out, but recommended referral to neuropsychology. Then neuropsychology turned it down.

I'm not sure my GP will have put the strongest case. Our conversation was mostly about problems with working memory, but I have a lot of other stuff. Not nearly as bad as some (or many), but it's made a big change in my life, and I think I deserve some help, at least an assessment and diagnosis.

This was my attempt just now to draft something for my GP. Maybe it's a bit too wordy. I'd welcome any constructive suggestions.

Neuropsychology referral

I want to push for a neuropsychology referral for assessment and diagnosis of what I believe is post-concussion syndrome following a road traffic accident in which I was knocked off my bike and hit my head on the road. I had complete memory loss temporarily, but then a range of ongoing symptoms that have continued to the present day. I’m hopeful that there will be some help available in terms of therapy or treatments, but even having it recognised and a clear diagnosis would feel very helpful. Struggling with the ongoing symptoms I have is hard enough, but it’s even harder dealing with the isolation that comes from having an “invisible injury” that others just don’t see or aren’t quite sure what to think of.

I tried to get it investigated years ago, and was sent for an MRI, but when that seemed normal, nothing more happened. There had been talk of referral to a service at King’s. Perhaps I should have pushed more at the time, but it can be hard to advocate for oneself when struggling with cognitive, physical and emotional symptoms with a lack of support from others. I’ve been struggling along with no help.

I have persistent cognitive, physical and emotional symptoms, including marked difficulties with working memory which are highly stressful and severely affect my day to day functioning. Even simple conversations can be difficult, and often I avoid situations where I already know I’ll struggle. I’m unable to function as people expect in situations in which there’s more than one demand on my attention, which affects me in all aspects of life.

I also have extreme sensitivity to noise, which makes me reactive and exhausts me. I have difficulty taking things in, processing them or communicating, even in normal situations where more than one person is talking, or if some kind of background activity catches my attention. I regularly have blanks when I have no idea what the conversation is about, and have to get people to talk me back to the point we’d got to (if they’re sympathetic).

I suffer badly from fatigue - situations I previously enjoyed exhaust my available mental energy very quickly and I feel unable to function. Overwhelm and overload happen very quickly. Although I’m currently working, this takes most of my available energy, and leaves little for other aspects of my life. Mental tasks are just much more tiring. I regularly need naps throughout the day, even at work. Two hours of napping a day is normal. If something has happened to mentally exhaust me (which might just be someone talking in an excitable or stressy way for a while), I might well sleep for three and a half hours, and still wake up feeling wiped out. I have difficulty concentrating, and regularly just can’t do something mentally because there’s no available mental energy.

This has had a significant impact on my life, including relationship breakdown, changes in relationships with friends, isolation from family and at times being unable to work, or limited in the work I can do.

I believe I also may have an increased risk of dementia, and would like to understand what I can do to minimise this risk, or manage my life around it.

Reasons for referral:

Persistent Symptoms over the long term:

Cognitive: Difficulty with working memory, concentration, attention, processing, spatial reasoning/ directions.

Emotional: Reactivity, anxiety, irritability, depression, overwhelm.

Physical: Fatigue, sleep disturbances, sensitivity to noise.

Impact on Daily Functioning:

Significant difficulties in daily activities: work and social interactions due to cognitive, physical and emotional symptoms.

Medical History:

Three head injuries in the space of 18 months at the time of onset of symptoms. Symptoms for several weeks after the second (hit head on bannister falling down stairs); long term symptoms after the third (hitting head on road, memory loss).

Neuropsychological Testing:

Recent neuropsychological tests (REACT Study, Great British Intelligence Test/ UCL) showed working memory and spatial reasoning in the bottom few per cent.

Other areas of cognitive ability significantly reduced from previously high levels (137 MENSA IQ).

Psychological Factors:

Anxiety, depression, isolation caused by social impact of symptoms and others not understanding/ believing/ “getting” them.

[James1984]

Hi Suwariwaza, that sounds really well drafted! Obviously the more medical evidence you have the more they can back you up. GP's can be really 'hit and miss', sometimes it pays to look around for one with a better fit with your situation.

[Suwariwaza in reply to James1984]

Talking about GPs being hit and miss, I've just come across the message thread around my referral on the NHS App.

My GP has got my main issue wrong (he's said I have a problem with short term memory, even though I started by saying I don't have a problem with long or short term memory, but with working memory - I even explained what it is and how it relates to my experience!)

Also, I got a message from my GP practice saying the memory clinic (where he initially referred me) had rejected it because they thought neuropsychology was more appropriate, but that neuropsychology had rejected it too.

In fact, when I look at the message thread on the app, there are rejections from both the memory clinic and neurology, but nothing to or from neuropsychology. Neurology said they could see me, but pragmatically it would be better to send me to neuropsychology (considering wait times and what would likely be most helpful for me). So, it looks like I have two referrals to other services, both of whom said I should be referred to neuropsychology, but as yet no referral to neuropsychology.

[TreesMTBI]

Hi Suwariwaza

Wow this sounds SO much just like something I wrote about myself a few years ago while trying to get NHS help (I had spent 5+ years in denial after my accident abroad before I got NHS involved).

I am on a very long waiting list to see neuropsychology. Been waiting coming up 2 years so far. This is a heavily subscribed service in the NHS, overloaded with the increase in demand from the need for neurodiversity diagnoses and Long Covid in addition to all the other patients sent their way. So they are overstretched in the geographical areas that they work in, and as they aren’t available everywhere, patients are also being sent into other already oversubscribed areas. Long story short - demand is extremely high right now.

I was referred from my neurologist. The GPs did try to refer me first, as I had been advised when I first contacted Headway to push for referral - but the referral had to come from the neurologist after he was ‘happy’ there were no ‘hardware’ issues with the brain as scans etc came back ‘clear’ even though we know and he said that doesn’t mean there’s been no ‘software’ damage, i.e. the neural pathways.

What I do wave to say is that while waiting, I was advised by a vestibular physio to seek out Vision Therapy, relative new here but more standard now in America for brain injuries. Again, long story short, I was assessed by a neuro optometrist and neuro consultant who are vision therapists and I am currently being treated for PTSD.

I would look up vision therapy as an interim while you pursue the neuropsych route, as it is going to take time, unless you can afford to see one privately. Of course vision therapy is private right now too but for me (and I have to say all that you have described fits to my experience so so much…), vision therapy has really helped me the most so far out of everything I have tried.

Good luck in getting the help you need.

Best wishes

Trees x

[Suwariwaza in reply to TreesMTBI]

Thanks for your repy, Trees. Interesting (if not encouraging) to hear about the wait times for neuropsychology. That might explain why my GP is trying to squeeze me in to other clinics. I did think memory clinic was more for dementia (which it is), but he said only a 3-4 month wait.

However, the memory clinic have been smart to that and pointed out I'm still relatively young and have a TBI, not dementia.

[Cinderella18 in reply to Suwariwaza]

One thing to consider in the meantime, if you can still get an appointment at the memory clinic, is that if they can test you as you are now, it will establish a benchmark for you at this point in time. Then, if in future you need testing again (eg cognitive abilities or memory issues appear to decline), they will be able to compare any differences. Nothing to lose from doing this if the offer is there.

[Suwariwaza]

Thanks, Cinderella. I think I'll get that anyway at the neuropsychology clinic. The memory clinic didn't accept my referral because they thought I should be going there instead, and I think they're right.

[RogerCMerriman]

I got referred in 2017? For assessment, and some support after this, mainly vestibular physio. I did see and my wife once maybe twice the Nero Pysych mainly over the accepting the new me, my wife found it more emotional than I did from memory.

Are you in contact with the local headway group or similar who can offer advice? I’m guessing your GP is like many GP’s a bit confused by brain injury.

I got referred to the falls clinic by one GP early on, they just referred me to the community rehabilitation folks!

[Graceissufficient]

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[Painting-girl]

I think you're correct about the referral to neuropsychology, even though it's many years late. Would it help you also to talk to the Headway Helpline? What has made you want to follow up with treatment so many years after the initial injuries?Can you possibly afford to go private? I was referred to one by my neuropsychiatrist, and when I found the travelling and cost to central London too expensive, found a neuropsychologist locally to me who specialised in brain injury rehab - and she was brilliant with practical strategies to cope.

Am seriously thinking about seeing if I can book some new sessions with her as although I'm well past the initial stage, and much improved, am.currently grappling with the fact that everything isn't totally back to normal.

[RogerCMerriman in reply to Painting-girl]

For myself having the validation of the assessment and a report afterwards which picked up stuff I’d not expected or noticed. Plus going to headway group meetings and seeing others going through or having had gone through similar.

[Suwariwaza in reply to Painting-girl]

Yes, I might try the helpline. Thank you!

I want the validation of having an assessment and report, as Roger says below. I'm not sure how much is likely to change after so many years, but feeling supported in managing my symptoms would feel like a big help. Up to now, it's been a bit like I'm just not measuring up to what's expected of me, because my family don't really accept there's a reason for my difficulties.

Once I've sorted out a referral on the NHS, I'll see how long that is likely to be, and if it's too far away, I may try to find a way of getting at least the assessment done privately. After all these years, now that I have some kind of external evidence that I'm not making it up, I don't want to wait around, I want to be doing something.

If you're finding it difficult at the moment that things don't feel totally back to normal, I think it sounds like a very good plan to see your neuropsychologist.

[James1984 in reply to Suwariwaza]

Be careful where you seek support and 'validation' from. That's why you came to us instead of them. Many of us have problems with friends and family in our own lives. Sometimes it's because they don't understand, sometimes it's because they 'don't want to' understand. We can't choose our family, but we can choose to 'branch-out' and network with more caring people.

I say all this because I've been through the same scenario you have, and I'm sure many others have to.

[Suwariwaza in reply to James1984]

Yes, it's made a huge difference getting support and validation here.

I think you're right about family. I'm thinking more of the assessment providing some validation for me, rather than looking for it from my family.

I am hopeful that once I have it, my sister may see things differently. My step-mother (who's been more hostile), I think will have a choice whether she wants to be more accepting, kind and supportive - otherwise I don't want to know what she thinks. I think you may have hit the nail on the head. I've come to realise that maybe her hostile reaction to my difficulties is exactly because she doesn't want to understand - that she has an underlying hostility towards me anyway. Families can be strange.

[Painting-girl]

Definitely ring the Headway helpline in office hours, if you can. I think we all seek some justification for the way our injuries have affected us, but it feels hard to get anything definitive from the medical professionals on paper, partly because of the terms they couch reports and letters in. It was different seeing people face to face, who said bluntly 'well you're like this because you've had a brain injury'. Likewise being on here did more to help me foster acceptance than many hours of therapy.

[Suwariwaza in reply to Painting-girl]

Thank you! Yes, I'm sure you're right. I'm hopeful, though, that signs of medical people taking it seriously and doing things will have some kind of impact.