progress for meningitis sufferers but more progress i feel that is needed

recently it was announced that there has been some evidance that meningitis does cause behaviour problem due to the swellling in the meningines.

The meningitis Trust are appealing to schools to carry out assesments to provide support for children who have suffered with meningitis which I believe is very much so needed, I personally was above average at school so managed to get back on track quite quick however I had missed quite some time of and continue to do so with numerous appointments and also my behaviour was not what it was before.

However I do believe there does need to be more progress made where it comes to benefits system as meningitis after effects can seem to at times not " fall under a catogory" or be recognised as a "disability" It is my belief that meningitis even when it is causing sleep pattern problems, migranes and memory loss can be dibilitating maybe not to the severity as its worse form but enough to stop you functioning and perorming your daily tasks and I feel this this needs to be more recognised plus the ordeal you go through suffering from a bout a bout a meningitis.

I wonder how we could go about getting this more recognised?

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  • Hi Hannahg. I absolutely agree with you. I had Bacterial Meningitis last year as a middle aged adult. Like you I have not suffered severe physical disability although I do have balance problems and prone to bouncing of walls and doors and when outside falling heavily. But like you are identifying a lot of my difficulties are due to the frontal lobe damage I sustained. I now struggle with day to day life because of memory problems, difficultiy understanding new information, processing, maintaining focus, motivation, mood problems, aggitation and tearfulness etc etc. I struggle to look after my 6 yr old son and can no longer engage in actiivities like I used to with him. Mental exhaustion is a big big problem that is hard to overcome or manage on a daily basis. I have fallen through a gap with regard to benefits because it is the hidden disability that cannot be seen but is majorly handicapping. I am in the process of applying for DLA but I hold out little hope. Like you I wonder how this issue could be addressed. Take care

  • I have now got some phsysical disailities in that i have epilepsy and neurolagical displacementent (which looks very similar to stroke but only jst suffered this nuro displacement in the last few weeks) and even epilepsy caused by meninigitis isn't seen as a disibility, I am concerned that benefits like dla do not recognise meningitis after effects as disabilities and believe considering all of the campaignagns this should of been one of them as finiancial strain is one of the sad factors to the illness, many of us have had to pay for own adaptions or aids related to meningitis or costs to hospital appointments, soe of us can't work due to side effects ther for I believe its crucial we get the benefits we are entitled to without any further uphill batles. I was lucky to get an award with DLA however it was for a short time and is already up for review in December and I dread that they will decline and I dn't know then what wlll happen I hope a campaign will be launched or something is done to help people like us so we get DLA easier and have one less battles as we have all gone through enough with the illness and have enough to deal with suffering with the after effects, I hope your application is granted. take care

  • Thank you for your posts regarding the difficulties faced in applying for and being granted DLA. The Trust is aware that many people have problems in getting their after-effects recognised.

    As an organisation, supporting those who have been affected by meningitis, we are currently looking at what we can do and how we can help in these situations. I will post any developments on this forum.

    Claire

    Meningitis Trust

  • not just children, for 2 months i felt angry all the time, and my family had to use a code word, to let me know i was off on one, then from anger came the crying, then sulks, then got back to normal

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