For this year's Action for Brain Injury Week, Headway is launching a positive campaign to help GPs diagnose, manage and refer patients who are affected by brain injury.
As part of the campaign, we have developed a short survey to gather people's experiences of care and support from their GP after brain injury. We would like to hear your story, whether positive or negative, to help us develop the campaign and direct our information.
If you would like to take part, please click the following link:
The survey will take no more than five minutes to complete.
To find out more about our Action for Brain Injury Week campaign, which starts next week, visit abiweek.org.uk
A big thank you for your support,
Headway.
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23 Replies
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Hi Headway,
I filled out the GP survery. Luckily my GP has been very good.
Could we have a similar survery for neurologists? I have experienced a huge problem with the care or lack of I receive from them. Because I look alright, they do not want to know even though all the medical evidence is there as to the cause of my problems.
Many thanks for completing the survey, it's good to hear that your GP has been very good, as many are.
You make a very good point about extending this work to other professionals - at the moment we are focusing our campaign on GPs to get the information to primary care providers who are playing an increasingly important role in services, however we will take your comment on board when we're planning our future campaigns.
and i have to say, i dont expect a gp to know the ins and outs of my conditions a gp has to cover all types of illness so no one can possibly expect them to know it all.
what i do expect is that they know where to refer you to get the help needed.
i am lucky my GPs are great they have referred me when they have felt appropriate or got out of their depth .
Thanks for taking part bikerlifestyle. Absolutely agree - GPs aren't expected to be specialists, so we are launching an information pack for GPs next week to help them provide support, information and make appropriate referrals.
Hopefully this will help people to get appropriate information and support for their condition in the early stages.
it is odd how its later stages that a fair few of us find out about headway, i think if i had of known about headway it wouldn't have been as scary and as lonely as it was.
I was lucky enough to find out about headway when i moved up to Scotland about 6 months after my RTA. I was shocked to read my hospital records, my mum and partner and family and friends said i was repeating myself over and over and not making much sense, but at one of the assessment things in the a&e they said i responded appropriate, I do not have any memory of it but it made me wonder how do they know what is normal for each person they see? It must be a very had job to do!
My GP up here was great he refered me to lots of other clinics to get things fixed and working properly, but i dont see them now unless i am poorly which means its hard to get help for benefit stuff. Im not ill just a bit broken.
No one expected it to take so long to get to the 'new me'.
I'm very gratefull for the input of Social work support workers and headway in helping me to stop hiding away scared and confused and getting me more functioning like 'normal' folk.
I'm really, really pleased that Headway is undertaking this survey and campaign. My own experiences with my GPs were almost entirely negative, I'm afraid. I felt very strongly that no-one else should experience the lack of care that I did and I meant to put together a formal letter and some Headway leaflets to give to my GPs' Practice, so that they would know better next time. I'm ashamed to say that I just couldn't get that letter together. (I see the GPs around the village regularly and it would have been awkward, plus the mental effort in trying to say the right thing forcefully but without rancour was too much.) So I have completed the survey and would be pleased to take part in Headway's campaign.
Good to hear that others have more positive experiences, by the way!
I filled out the survey. I live in Canada and my GP is a first year resident that changes every year and they are rather clueless. When I have difficulty understanding what they are telling me they get frustrated and say never mind and talk to my caregiver like I am not in the room.
SmileyGurlz, that must be SO frustrating for you!! I wonder if it might help if you got a card printed out, saying something along the lines of 'I have cognitive difficulties as a result of brain trauma. This does not mean I am stupid. Please speak slowly and be patient!' You could show it to these young doctors at the beginning of an appointment. Who knows, it might even teach them a thing or two.
Hi Headway, I completed the survey and added my comments. I forgot to say after finding Headway we went back to the G.Ps (5 years later) saw a younger doctor, gave him a copy of the G.Ps guide to understanding a brain injury and he said "I'm a G.P (General Practitioner) and have a little knowledge about lots of illnesses, so only a little about brain injury and this information helps, and i can refer you on to the appropriate help via our systems and procedures. We have now received much more help in my 6th year of braain injury than at any other time. I really am all about the hidden disability, basically its so true....... if you can't see it, apparently it's not there. Thank goodness for Headway!
Although we are now coping much better, its a real shame I/we didn't have Headways help way back in the beginning.
We hooe the outcome of the survey helps past, present and future survivors and family's
I am so glad you are receiving the help you need. Unfortunately, certainly in my area, ALL the medical profession have been of little or no help at all! My son had a serious head injury 15 years ago and was in an induced coma for several weeks. He has been left with epilepsy, mobility problems, and sometimes, bizarre behaviour. He has no memory of seizures, refuses to accept he has ANY problems (apart from his epilepsy and mobility issues) He is a GP's dream - will never visit the surgery as "there is nothing wrong with him" People tell me "something should be done" Just what I do not know. G.P's and consultants refuse to discuss anything with me quoting the Mental Health Capacity Act, Patient confidentiality - anything as long as they haven't got to get involved!!!! Part of his condition I suppose, but my son refuses to accept advice from anyone, says he is alright but he is not!!! I feel there is a tragedy waiting to happen!
Thank you so much to everyone for your comments, and for completing the survey.
I've posted another blog today about all of our campaign materials now they are released - the idea is to create something that GPs can refer to whenever they see a patient with a brain injury.
LeslieDilks - it's really good to hear that your GP found our older leaflet so useful, thank you for the feedback, that's just what we hope to achieve by improving the information we provide.
I knew of Headway through work a few years ago but needed to search for support and hadn't remembered Headway as suffering bad memory problems since my concussion.
I read on the Headway website how common it is for the GP to misdiagnose anxiety or depression as symptom of post concussion, rahter they see it as a form of hypochondria. I was and still am waiting for counselling. Sometimes I feel my GP still thinks I am just overreacting, though I have been given the general basic advice on sleeping well etc. Thank you Headway for pointing this issue out. I initially was laughing and in good mood after the injury and coping really well but now am starting to feel low. It has been nearly 6 months and I also suffered a second blow to my head last month so it is really not healing well yet. Really need support and advice and am still not confident the gp would easily refer.
Thank you for your comment. I am sorry to hear of your continuing issues, and I hope we can help you.
Can I suggest you contact our helpline on 0808 800 2244 or helpline@headway.org.uk to talk things through?
They can offer information, signpost to relevant services and, perhaps most helpfully, offer a listening ear.
Headway also have a network of local groups and branches that I think you may benefit from. You can search for your nearest at headway.org.uk/in-your-area...
Of course the members on this community are always willing to offer support and share their experiences, so please do post any questions or concerns you have.
Best wishes,
Headway
Completed Survey was aware of Headway when I worked at a Doctors Surgery was not aware of the brain Injury untill 50 yrs after the event
never saw a neurologist. after a penetrating head injury. just a scan later on, then i saw a solicitors neurologist and he said i havent got your xrays with me, and made a call said xray fine, and gave me 100 epilm tablets. and that was that. and fourteen years on suffering. .
I tried to register with a GP in Bournemouth together with my daughter but the GP receptionist said I should come back with my wife, who was in the Philippines. As a result of that denial my wife is still in The Philippines and I still need help getting back to work, fixing my housing, claiming my benefits and resuming a normal life.
Many disabled people are denied the help they need from The GP who maybe is trying to "weed out" disabled patients who might need expensive care. This is not a ver good system for Public Health. Finally I did manage to see a Brain Injury specialist while I was staying with my friends in Germany but have still to get the help I need getting back to work at The Department For Digital Culture Media and Sport DDCMS.
I think I will now try to join the relevant Trade Union PCS as I really need help. I am not so depressed today as my daughter is visiting but normally I could not get this far before I get to tired. So I will try joining the PCS now as the Trade Union might be able to help.
Still no reply from Conor Burns MP and no reply from Headway or the Citizens Advice Bureau. I would like to be part of society again but so far awaiting inclusion.
I had an absolutely rotten service from the GP in Bournemouth and I will report them and get them struck off when I am back. They said I should come back and register with my wife yet my wife is stuck in The Philippines due to the Hostile Environment Policy in the UK immigration so no chance of a GP. No chance of any benefits (my benefits got cut off) and nothing then. What a service! Thankfully I have some friends to stay with until the awful regime of Theresa May is gone!
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