Advice please on next stage of treatment

[gabbycat]

It's nearly two years since my husbands bi and he seems to fallen through a gap in nhs healthcare. He is functioning, trying at the moment to work part time and has the familiar symptoms of headaches, tinnitus and visual disturbance when tired - and fatigue of course. In the few weeks after the crash that injured him he saw a private neurologist who provided advice to his GP on pain relief. That was through work health benefit and he no longer works there so can't go private now. He has plateau'd in recovery and wants to be able to talk to a specialist about all his symptoms and certainly about pain relief going forward. His GP, in the nicest possible way, hasn't a clue. The GP tried to make a referral to a neuro-rehabilitation dept at Southmead in Bristol but that dept doesn't even seem to exist. There is no neuro rehabilitation in Somerset and I am not even sure if neuro-rehabilitation is the dept he needs. The GP is just guessing and taking my husband's word for what he needs - as if he would know! I'm trying to find someone in Headway to talk to who knows the local services but thought I would ask you guys.

So in summary - on going post concussion symptoms, debilitating headaches and fatigue, seriously considering he should be giving up trying to work. In your experience which of the neuro specialists should he be asking his GP to refer him to?

[paxo05]

Hi there.

Two years is about the plateau stage. Know is the adjustment time.

I was lucky in that the insurers payed for private medical.

As it iona I was referee to an occupational therapists. ..May seem strange...But they we able to refer me to other specialist.

If your going. If your gp is helpful he should refer you on.

Good luck.

Pax

[sealiphone]

It looks like they may be based in Clevedon now:

nscphealth.co.uk/services/c...

Even good GPs often have no knowledge regarding Neuro services and lack of knowledge concerning symptoms is the norm, from what you say your husband has a very good GP (it's all relative).

In terms of work it's probably a Neuropsychologist, although a GP referral is to the service, who will then decide which specialist to see.

I would expect a local Headway to have a good working relationship with the Neuro. service

[Kirk5w7]

Hi Gabbycat.

This is what we all experience. It isnt a gap in the nhs this is what is available on the nhs.

Your husband has been treated through the acute phase and is now what i refer to as the many walking wounded. It is up to us now as individuals to seek out what is required.

It is going to take time for you because referrals on the nhs take time, there are many more than the system can cope with.

As has been said you were lucky to get the private treatment im afraid its join the queue now. My neurologist gave an instruction that he wanted to see me again in 4 months but when the appointment came it was 6 months and thats if its not cancelled!

So I’m afraid this is how it is now, you will find a way, im afraid im a bit ignorant of which neuro- professional is best for you others can help you there, or Headway.

Good luck with your quest.

Janet x

[sealiphone in reply to Kirk5w7]

I feel I have to challenge not the fault of the NHS, it's also about PCT commissioning services, as they use measurable "Quality of Life Outcomes" and the service for a TBI is difficult to quantify unless it's a certain type of rehab.

[Kirk5w7 in reply to sealiphone]

Sealiphone, you have a mire in depth knowledge of these things and i bow to them.

I can only speak from personal experiences, i and many others have had to search the internet to discover treatments that can benefit our recovery. This treatment, eg vision therapy is not generally available but should be for all brain injury sufferers. I had to find a vision therapist myself who confirmed i have indeed got peripheral vision loss, which i knew after all it is my sight, and after exercise treatment has improved my balance and coordination.

When i left rehab yes i could walk again and care for myself, and i knew i would never work again but 6 years on i am far more independant. This independence could have been achieved sooner had the right rehab been available earlier.

The NHS is the subject of much any arguments. Dont get me wrong i think it is marvellous and we should do all we can to support it, i was just pointing out in my clumsy way that rehab for TBI does not seem to cover support to return to work. Thats all.

Janet xx

[sealiphone in reply to Kirk5w7]

Return to work outcomes would indeed be a good "Quality of Life Outcomes" but there's no evidence to support this is an outcome. Another problem is that the U.S. is way ahead of the UK and a lots of what we do is based on their experience, so is it relevant to us (?).

An example all the treatment for fatigue in the U.K. come from U.S. research into M.E. & CFS.

Yes the service you experience is fantastic it just needs to be available and appreciated widely.

Certainly my attitude is prejudiced by my political beliefs.

[cat3 in reply to Kirk5w7]

Not clumsy Janet ; just telling it as it is............... xx

[Kirk5w7 in reply to cat3]

😁 Thank you xx

[iforget in reply to sealiphone]

I have anterograde amnesia after my TBI and managed to get a place on a specialist memory aids programme...The PCT refused to fund initially because it was on the other side of London and so a different area but my GP fought for it and after much wrangling I got it. It was a life changer. It is always worth fighting for what you need.

[sealiphone]

True but your PCT hadn't funded what another had, so that's why you had to fight.

I quote the NHS constitution:

"You can choose the organisation that provides your NHS care when you're referred for your first appointment with a consultant. So if your GP recommends that you see a specialist, you can choose where and when to see them".

Just had a look if I had to use another service it's 140 mile round trip!

[lloydyuk]

Hi, ask your GP to refer your husband to the Head Injury Therapy Unit based in Frenchay (still on site of the old hospital) it’s outpatient rehab basically. I went there myself after being in residential rehab direct from being a neuro inpatient. HITU are really good. I live near to the unit however bizarrely my partner also has a TBI (how we met) & she relocated to Bristol having had no rehab in Hampshire and secured a GP referral to HITU fairly quickly although there is a waiting list there I believe. Good luck.

[gabbycat in reply to lloydyuk]

Thank you. I will persist with HITU although Headway told me I was out of area (Somerset) and so we couldn't access it. I also spoke to someone at Frenchay who told me they only do outpatient neuropysch and inpatient rehab so they couldn't help.

[lloydyuk in reply to gabbycat]

Agh ok. It’s within North Bristol NHS trust? They offer more than psych there. BIRU Brain Injury Rehab Unit is in an patient centre. Did you say what service you think your husband needs? I don’t know what NHS trust covers where you live. Might be worth an internet search of neuro services in your trust.

[steve55]

the tinnitus is more than likely caused by the bi, so the gp needs to refer him to audiology at your local hospital.

cant comment on the visual disturbance but fatigue is all part of a bi, so its possible he may have gone back to work too early.

why hasnt your gp taken advice from the private neurologist regarding pain ?

your husband is looking for a mri scan.