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No support for my adult son who is now 22 had has complex ne...

Posted By tulusnan

"No support for my adult son who is now 22 had has complex needs."

About: Dudley Wallis Centre NHS St Helens CCG

(as a parent/guardian),

i am totally disgusted that my 22 year old son is still having on going unmanageable outbursts of rage etc my son who at the age of 3 months had his first vaccines immunisations within 2 weeks my son was fighting for his life in icu unit B2 alder hey hospital when all his body organs started to shut down.  He had a massive acute attack of celebral odema to the grey matter of his brain which i now know is his frontal lobe area and his personality as a person but more to the point childhood and him making a recovery.  He had lost his fight for life several occasions before he was actually placed on a ventalator in intensive care this was 2 weeks of pure hell stress and worry i was told that it was a near miss cot death as i was only a young mum.

I didnt question there reasons until i actually still couldnt sleep at night which i developed a disease annerxia nervosa as my nerves were so shattered i was scared it could happen again then as a result of me not leaving.  I  wanted answers reyes syndrome was a possiblity as i said there isnt a near miss a cot death happens or it doesnt.

My son was statemented educational special needs through out his school life my son got tested for ADHD  which was ruled out from the age of 6 and half the medication made him extremely horribly worse. Ritalin was taken away from this has spiraled into several problems and issues and his personality has suffered massively from this diagnoisis which was so apparent noted throughout his life and appotments everywere to try and get a statement of educational needs when he was 16 this actually stopped as they were not really interested in him anymore.

He was getting more and more unmaneagable and uncontrollable high risk behaviour hyperkinetic also without  any warning this was a complete change in the way my son was acting over the years.  My son was diagnosed jan 25th 2017 as having frontal lobe brain damage with extreme complex needs and unstable and emotionally personality disorder also congitive behavoural and dysfunction executive disorder.  Then the consultant wanted a second opinion review which he too diagnosed as my son having far to many needs to actually say which one it was that has the most importance there is no other way round it but as this happened from 3 months old this actually makes him unsuitable for any of the NHS services for brain injury trusts.  This is because he has got ABI with all the complex difficulty around that issue it has destroyed our lifes as a family and also it has been now nearly 12 months since i had that confirmation of what is actually wrong with my son and we are still no clearer in which help is avaliable for us to help my son live a independant life.  This to me has caused me massive stress and axiety as i have not been able to plan ahead since my son was first ill and what is really needed for my son is to go to a brain training rehabiltion centre for his needs as this is getting to become quite a problem on its own as no one says he meets the criteria for any help i have even gone to social services and they have gone to the ccg for funding for my son but he needs a neurophysco social report to learn what areas are at there worst and how damaged his frontal lobe is he actually doesnt have a mental health illnezss its a ABI 

so this complicates everything 

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Responses

Response from North West Boroughs Healthcare Trust Complaints Department, Complaints, PALS & Compliments Officer, North West Boroughs Healthcare NHS Foundation Trust 6 years ago
North West Boroughs Healthcare Trust Complaints Department
Complaints, PALS & Compliments Officer,
North West Boroughs Healthcare NHS Foundation Trust

Submitted on 24/11/2017 at 15:46
Published on Care Opinion at 16:13

Thank you for the taking the time to post your comments.

My name is Katherine Earlam and I am a PALS officer for the Trust.

I was very sorry to hear of your experiences and I would like to offer my apologies.

I would like to assure you that this is not the level of service we expect as a Trust.

Your comments will be passed onto the team and I would welcome the opportunity to speak with you so that I can help to resolve your concerns.

My contact details are:

Number: 01925 664450

E-mail: complaints@NWBH.nhs.uk

My hours of work this week: 9.00 am – 5.00 pm

Once again I would like to thank you for taking the time to tell us about your experience. We sincerely value your feedback as this will help us to improve our services for other people in the future.

Kind regards

Update posted by tulusnan (a parent/guardian)

just to say to everyone that i phoned up the walton centre on friday and they actual confirmed that finally my son is on the waiting list for a neurological assessment but there is a 3 to 6 month waitin g list so thats hopefully but there was a incident on tuesday of last week that some random person asked my son did he no if the road my son was in was a dead end and my son automatically kicked off and went to attack this person as he thought he was being funny and acting strange to ask for directions etc im lucky it was actually on my front so i could go and sort out the situation that may of become of that first thought wrong outcome

Update posted by tulusnan (a parent/guardian)

well its been now over 12 months since my son was diagnosed and also im still no better of in findingout who is actual responsible for the commision of needs or help for my son all i know is that i am now back to the beginning of nothing were it all began but in the mean time my son is still living a life of maddness and that obviously with great sadness as you can imagne everyday is a bonus that i have to get through im disgusted i n the way my son and myself are actually being treated i have spoke to lots people doctors even consultants and as they all say the same they are unsure how i can or should move forward with this as being a responsible parent i am now at the end of directing myself in the help i should be recieving for my son to try and have a normal life

Update posted by tulusnan (a parent/guardian)

Well I have been trying to contact katherine as above without any luck and then in the meant time my son who is now on the verge of losing all hope within all services I went with my son finally all day on a neuro psycological assesment. 2 consultant psychiatrists feel that he has been affected by his childhood brain injury possibly due to his cardiac arrest and displaced interplay between organic damage and subsequent psycholigical devlopment that assessment was concluded early last year.

It has taken me a full year and a bit to actually get him the assessment he needed in order to move forward or even have a bit of closure in our lives he was refered in nov 2017 he recieved his all day appotment for his test in late may 2018 and as they clearly stated after the tests he was there from 9.30 up to 4pm in the afternoon there was no more appointments made but they did feel that it was hard to give a specific issue or problem or even diagnose what it is that we are going to have to face in the future. Im so gutted that no one wants to help us out here the social services said it was also alchohol that was taking control over him which it clearly isnt my son had stayed all day without the need for a drink nor did he need them on the other 2 occasions they saw us so how can they justify that is a dependant problem.

I feel that they just dont want to take blame like the hospital that is we think at fault not really looking into his brain trauma enough for me to be guided along the right track for his future he was only growing up. And to be told that it isnt the right way is hard for me to understand never mind him, as a mother of 4 children I have had my whole life on hold until I sorted out my son and tried to get someone to understand that he had been mis treated from all angles and now im left with the issues and complex problems and not being able to leave my son out of my sight for a few hours. It is driving me and him crazy he has also got a personality disorder on top of everything else. I have asked for brain training to be funded by either the ccg or social services they both refuse to do any of this. I am very unhappy at the way I am being left to deal with all the issues without understanding or reasoning the problems that has on us as a family

Response from North West Boroughs Healthcare Trust Complaints Department, Complaints, PALS & Compliments Officer, North West Boroughs Healthcare NHS Foundation Trust 5 years ago
North West Boroughs Healthcare Trust Complaints Department
Complaints, PALS & Compliments Officer,
North West Boroughs Healthcare NHS Foundation Trust

Submitted on 30/05/2018 at 12:04
Published on Care Opinion on 11/06/2018 at 14:45

Hello

Would you be able to send us further information to enable the team to progress to the correct team so that they can support you, we will need further information, I.e. telephone number, son full name and address, son's date of birth.

Please give either Bev or John a ring in the team who will be able to help and support you on either 01925 664450 or 01925 664004.

kind regards

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