First Headway meeting

I went with daughter during the last week to her first headway social meeting.

Due to having her Direct Payments cut a couple of years ago ( long story and the cut never should have been made! )

Anyway since the care act 2014 came in reviews have had to be done and daughter had her Direct Payment cuts given back!! ( say no more !! )

We went along and were warmly welcomed, the group were a friendly crowd and by the end of the meeting daughter was hooked!

She can't wait for the next social meeting and is already planning to help with awareness days and fund raising.

It has really given her a much needed lift as she has been very low ( mild depression ) which is the result of the initial D/P cut.

Once daughter is settled into a routine with Headway I can pass on her time with them to her support workers.

Mr Cameroon and cronies - take note

Your cut back affect peoples lives drastically - you may have a head that's working, but not the way it should - you also have a small heart but could in fact increase it in size if you thought more about your actions!!

18 Replies

  • Here here! heart isnot the only small thing on him,i bet!

  • headchild thats brilliant, something i always push how did you find it ?

    its just as much for your benefit as your daughters

  • steve55 my initial impressions are of a very caring and friendly group who are trying hard to make aware brain injury to others whilst supporting the survivors in our area.

  • Yes - HW certainly do magnificently, though it's a shame so many cracks exist in the Care system for the charity sector to fill. No surprise though - this govt (and all those who voted for it...) know the outcome of a 'small govt' means those most in need of support are thrown on the mercy of, frankly, better souls. Harrumph, and then some..


  • I agree Bards this Gov have no sympathy towards the vulnerable in the UK.

    I was told many BI survivors had had income cut back for support at home and in the community.

    I suppose I could say my daughter is fortunate in the fact that she has been left physically disabled and partially sighted, -( but that's unfortunate isn't it )

    However what this does mean is that she will probably get more in support than many others - who do indeed actually 'need more' but are deemed to be able to manage -

    Does that make sense?

    Even so it's been a battle and as I initially said she has just been awarded 6 hours extra each week - where others have had it taken away!

    I'm hoping the H.W group will be a new venture for her which she will enjoy.

  • Agree - the State's support pot is not only small, but poorly targetted in some cases. Moving on... hopefully your local HW may have some form of Buddy system, or at least both yourself and daughter can exchange contacts amongst other Service Users and families to share experience and find joint activities outside of HW. This can be positive in itself at getting more independence as there is then life outside immediate family, HW and funding. Stepping outside of 'the bubble' definitely has helped me with sense of self worth etc.

    Keep us posted x

  • Thanks Bards I am also hoping for some new opportunities for my daughter and yes I will update from time to time.

  • headchild i understand what youre saying...........with your daughter you can see physical evidence........many of us dont have that and people look as much to say whats wrong with him.

    i had a stroke 4yrs ago which left me with numness and tingling down my left bi is my frontal lobe, which left me with mental health issues.

    i was at 1 headway meeting when this guy came over and asked me what was wrong with me ( he had , not too severe , mobility issues ) i told him id had a stroke and he got quite nasty saying he wished he had my mobility, i told him he was welcome to it it and he could have my mental health issues to boot.

    my favourite saying used to be .....but for the grace of god go its.......disability does not have to be physical.

    glad to hear your finding headways useful and really pleased about the extra 6 hrs


  • Steve I doubt the people doing the assessments have a true understanding of the person they are assessing.

    It must be a daily struggle for those with BI's who are left with little support.

    My dad ( after retirement had a stroke which affected his mobility, I remember his frustrations all too well.

    Two years ago I lost my youngest brother to a Brain Tumour and watched helplessly as he deteriorated whilst desperately trying to keep his mobility.

    BI's are cruel - they can be unseen conditions.

    Stay strong x

  • Wishing both you and your daughter more happiness and an easier future.

    Love n hugs


  • wow what can i say headchild definately been dealt a bad stack im with randomphantoms.

    you i read and reply to some of the posts with tears running down my cheeks and this is one of them ( im setting myself up here ) emotions are like a cant live with them and you cant live without them !!!

  • Sometimes we are dealt a bucket load of @@@@ steve. All we can do is carry on. I'm sure you as well as everyone on here have had a dollop of it.

    I'm hoping the Headway will open up new things for my daughter which she will enjoy.

    How do you cope with day to day life - do you have support or just left to struggle

  • headchild im married so its down to my wife, so the monthly meetings ( although we do meet at each others house for coffee evenings ) help.

    this and facebook is my only contact with the outside world during the week ( my wife works and will phone me to remind me to eat and take my meds.........then its start or continue a drawing start or do a bit of a water colour watch tv and so the circle continues. i think what is really annoying , is i have a good library of books but cant read them because 1 i find it hard concentrating 2 when i go back to the book ive forgotten what ive read!!!

    watching a tv series with my wife is fun, she has to remember what has happened since the start.

    i tend to buy a lot of videos ( im interested in history ) so i buy dvd on the subjects i know , so when i come back to the dvd i know whats going on.

    music helps......soft music when im happy and really heavy music when im angry....but i cant remember the last time i got really angry.

    from what you were saying is it a day centre your daughter goes to ?


  • It sounds as if you and your wife have adapted to the 'new you' Steve. good news to hear and well done to both of you as it's not easy is it. Your wife sounds a wonderful loving lady - you are fortunate to have her in your life which I am sure you are well aware.

    Yes my daughter goes to a Day Centre (full day ) once a week.

    A it helps her to get out of her home and mix.

    B she gets to do things she enjoys such as cooking and playing scrabble

    C It's affordable as her Direct Payments wouldn't run to a full day ( with support agency) with lunch and snacks thrown in unless she used all her weekly allowance ( she needs to shop ).

    Having lost the use of her right side to the Tumour she needs quite a bit of support - so it works for her.

    Like you she was an avid reader from being very young but lack of concentration has put paid to this.

    She spends the time when alone watching TV or using her Lap Top.

    History - I myself am enjoying local history since retiring and have joined our village local history society.

  • history is an interest of mine although ive got to say ww1 and 2 my main interest lots of dvds on the subject and like i say if i go away i can usually pick up from where i finish.

    i only get pip because i used up my ni contributions when i was off when i had my cateracts done ( had my stroke 2 days before i was due to go back to the hospital to get the all clear oh well ) !!!

    im really pleased she appears to be doing well , watch out for any slight change from her normal persona ( my wife said my changes werent immediately apparent and happened over a period of time.

    yeh it has been tough for her in many ways, having to get to know the new steve as opposed to the one she married 36yrs ago.

    anyway its the start of the weekend, so have a good one and possibly speak next week.


  • steve, I am researching our village as it was in the early years, looking for photographs making notes, speaking with the elders in our village and gaining their memories of when they were young.

    I am also taking pictures of the village as it is today, to preserve for future generations.

    I also have a recording sent to me, it is a lady well into her 90's who I know. Her son is speaking with her and sending me the information.

    I've done a bit of digging into my grandfathers past and family, he won a DCM medal in the war he was 18 yrs old and like many others had lied about his age to go and fight. I have a collection of newspaper reports, photographs and other things - history can be addictive!!

    I hope you managed to get out a little over the weekend steve ( and others who stay at home a lot ).

  • wow brilliant

  • Second Headway meeting attended and daughter is very keen to muck in and help with fund raising and awareness days, so it's looking positive.

    A friendly group again with some new faces, everyone coming to us and chatting.

    We learned of the Identity Card, just starting it's Pilot Scheme.

    As our area is on the pilot scheme I am going to apply for a card for my daughter.

    Although she doesn't have the outbursts which some survivors do and end up in the Police cells I still think it is a brilliant idea for her to have one.

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