Hi, I am relatively new to this site, in that I only joined last year and this is my first post. My reason for joining relates to my daughters needs and me trying to gain insight and help to best help her and know that I / we are not alone. I read the feeds daily and am so very cross at the amount of trouble people have getting the correct help and PIP!
It is really poor as when it’s to do with a brain injury you need help to get the help! I was able to assist my daughter and she was awarded PIP – so would like to share some things that I found useful and may be able to assist other people suffering have one less things to worry about.
My daughter had a tumour in her brain ( which had the same symptoms as a 'brain tumour') , so for me learning about the functions impacted was a starting point.
I found a site called ‘learningneurology.com – parts of the brain’. ( I’ll try and include the image to help – but do not know if it will work - as this is my first post) This showed a really detailed scan on the brain and the different areas with more detailed labels. Then, from that I googled each area that I knew had been affected by the tumour. From there I could check the symptoms and put in to words the impact that had on my daughter’s behaviour and abilities. One of my daughters areas impacted was called the 'cingulate gyrus' ( I had never heard of it ether), it is responsible for many things including her limbic system, the maternal bond section ( she thinks I don’t love her) and literally her ability to make decisions - how the heck do you prove that without knowing there is an area responsible for it? So if she'd had to complete the forms she would not have been able to explain this properly. I also took photos of her scans and included those where I could – as proof.
Using this I was able to provide links and explanations and images on any forms I had to complete.
I have been asking for a neuropsychologist for over a year now with no success, so we are looking privately as she needs help with re-connecting the areas that the tumour blocked – as if a brick wall had been built inside her brain. The NHS only seems to suggest local mental health people who do not have a clue about things on a neurological scale, which is very disappointing to say the least.
Many people have mentioned – you have to write about the worst day – this is so important – a good day is a blessing and you deserve it - but it's not the area you need help with – the bad days are when you need help – and the ones you need to detail as hard as it may be to do so.
I wish everyone well and hope you get the help that you deserve, getting access to PIP and UC should not be on your list of things to fight for or worry about xx
Written by
Klaus27
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Your daughter (though she mightn't realise it) is very fortunate to have you looking out for her with such industriousness and determination. It's true that brain injury, whether traumatic or from natural causes, is poorly followed up once the critical phase has been dealt with.
But all conditions are being neglected ; my neighbour aged 50 waited 9 months for cancer treatment, by which time it was too late. His mum was heartbroken knowing he died unnecessarily. I've waited since before Covid for treatment relating to brain injury and now find I need to be re-referred.
The medics are stretched to the limit of course whilst their pleas for adequate funding continue to fall on deaf ears.
I hope you find the neuro help needed for your daughter, but before taking the private route maybe speak with your local MP ? My daughter-in-law needed three surgeons, each with separate disciplines, for her procedure and, after waiting18 months, our MP had her admitted with the three surgeons available on the same day within 2 weeks.
Thank you for your kind words. It has been incredibly difficult and continues to be so on a daily basis. I do understand about how stretched services are - unfortunately, there had been so many opportunities for her to get help - but due to the fact they missed the red flags back in 2013 then promptly misdiagnosed her in 2015 with mental health issues for nearly a decade, ping ponging her from mental health to the GP at a rate of knots, this only made everything worse. I am in touch with my local MP and have literally just asked for help obtaining a neuropsychiatrist, so fingers crossed. It is positive to hear that this course of action meant your daughter in law received help after a long wait. And I hope your help comes soon. Half the battle is getting to the right team for help. I have seen many of the referrals and they do not seem to reflect what the problem is, which is an area that needs addressing asap across the board. Take care x
Thanking you for this information. Today, or more specific 09.00. I am contacting DWP/PIP, notifying that I am getting advice off CAB, with regards to the M.R.I have a brain injury, causing memory and behavioural difficulties. As well as a multitude of other problems.
But after a telephone appointment the DWP, tell me that I have no problems with memory (one of my biggest failings)
This after I told them confidently about my problems. I was reading from a prepared statement.
I sent the DWP, a Psychologist report from 2011, stating I have severe memory problems, as well as co-ordination problems.
The DWP have not taken this into consideration. Stating that I have no such problems. All this after a seventy five minute telephone conversation. This is virtually impossible to asses over the phone. I need to be assessed in person.
I wish you well in your future battles with various departments🙏
I hope you manage to get the help you need. It's hard finding the energy to keep going , and I don't have the injury, so how everyone in that situation is doing it and battling the condition is truly amazing. I wish you well too. I heard it mentioned tat they may look at increasing the funding for brain tumour diagnosis - lets hope this highlights the other areas of brain injuries that need help - especially in having specialists who understand at the DWP.
Welcome , your daughter is lucky having someone determined to fight her case.
I know my initial assessment was not helped by the specialist ( orthopedic consultant) on the panel seeing no reason for my problems and I looked fine. This dispite the mounds of paperwork from several different specialists in neurology and psychology saying otherwise.
He admitted he knew nothing in this field but was willing to discount their evidence.
I was lucky in I had a great social worker who demanded a specialist with some knowledge of my injuries. The hearing was rescheduled and I was awarded what was then dla.
It seems your case can be predetermined prior to hearing no matter what evidence at times
Thank you- I hope somewhere she sees that I am trying to help, although it doesn't feel like it. I can say hand on heart I had never argued with my daughter, until she got the tumour - that feels like such a long time ago now - I pray she can re-connect the wires so to speak and at least experience happiness. Like most people, I was unaware of how hard it is to get help, and am shocked at how little the powers that be seem to understand the brain and the implications and problems caused when it has been injured in any way. It must have been a comfort to have had a great social worker to help you, to get the help you need and deserve. I wish you well. x
It's strange to say that indeed lucky I was hit by a car driver who admitted it.
This opened up compensation which I used to get private medical rehab.
It involved travelling around the UK but it slowly helped .
I began to reconnect pathways . Walking and talking took time , but hey that is one thing I did have.
Initially I fought everything and was awful to my wife , family and friends. Many gave up on me, my marriage all but failed. But my wife continued to fight for me.
Eventually she fell in love with the new me and we got back together. A rare story in bi recovery. Nearly 24 years later and we've settled into our new life. It's not perfect but it is good.
Hopefully your daughter can reconnect and develope into the new person . Treat it as a new begining.
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