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Brain Injury is BIG: A small charity taking on BIG issues

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As brain injury professionals, how many of you have sought to give advice to the loved ones of  brain injured clients/patients and been faced with the (sometimes angry) response: “You cannot possibly understand what it’s like: this has not happened to you!”

The reality is that this response is often the function of transference of anger, fear and helplessness.

We all recognise that a brain injury has more than just clinical devastating effects but leads to uncertainty and anxiety in relation to personal relationships, family and social life, work or school, wheelchairs and equipment, housing needs and financial anxiety.

There is the added strain of navigating the complex world of continuing health care, social services care and benefits. The road is long and winding and the journey is neither easy nor pleasurable.

These were the very issues facing five brave women who found themselves thrown together at the same time at the Royal Hospital for Neurodisability, Putney in 2009.

Sue’s husband Charles sustained injury while on a charity cycle ride. Judy’s husband Simon and Lynne’s son Stewart had both been injured in accidents.

Lois’s husband Howard had fallen victim to sudden illness while Anne’s son Peter, was found unconscious in the street close to his university accommodation in Durham.

All very different people with different stories: but all sharing the pain and fear of a loved one in a state of Prolonged Disorder of Consciousness.

These five women found comfort and solace in each other: knowing they were not alone and they could support each other with information, knowledge and lessons learned along their individual journeys as well as moral support and friendship.

They soon realised that there must be plenty of other loved ones: other wives and mothers but also husbands, partners, fathers, sons, daughters and close family members who could benefit from this kind of love.

And this was the birth of Brain Injury is BIG. We originally called ourselves Brain Injury Group – but that is another story.

L-R: Judy, Anne , Sue, Lynne and Lois

Word of the group quickly spread around the corridors and in the café at Putney and soon posters and flyers were distributed with details of a website with a chat forum.

And as patients were discharged from Putney to various care homes around the country so did the geographical spread of the help group expand.

Often, the loved ones of patients just wanted a shoulder to cry on.

Not really seeking any advice but just knowing that they were not alone and there were others before them that had trodden the same rotten path.

And this led to the establishment of a telephone helpline: someone to speak to when no one else will either listen or appreciate your concerns.

Having established something wonderful, these five women realised that they must formalise this creation into a charity.

The stars were aligned and a number of occurrences happened almost simultaneously:

  • James Meyer, a successful management consultant agreed to take on the role as inaugural chair of trustees and transform the support group into a leading national charity with gravitas;
  • The Charity Commission granted charitable status. Unlike other charities with a rather broader remit, our charitable aims are to  provide support to those with very severe brain injuries: either those in a prolonged disorder of consciousness, or those with profound physical and cognitive challenges (meaning that there is a lifelong need for clinical and care support) and their loved ones; 
  • Warren Collins, a well known international personal injuries lawyer who specialised in brain injury cases approached the group – not as a professional but as service user, after the irony of his partner Bex ending up in Putney with PDOC following a terrible stroke. The group supported him in his needs and fears which were no different from the rest of us: but we realised he had skills which would help… and in due course we invited him to join as a trustee;

James Meyer, Inaugural Chair (L), Warren Collins, Current Chair (R)

  • We were approached by Brain Injury Group: a network of injury lawyers. Initially they were quite upset that we were using our name – but after we explained the work we do: rather than fighting us off, they embraced us and supported us. We agreed a name change to avoid any confusion. 
  • As a charity, we embarked upon a fundraising drive. Donations came in from sponsored runners, as well as businesses and generous individuals, but it was the inaugural charity ball that improved our finances such that we could launch our grant scheme

Our Grant Scheme provides support to both individuals and organisations supporting our service users.

Whether it has been to contribute towards a therapy costs, equipment or even the costs of travel to and from a loved one in hospital, the grant scheme has made a huge difference to a lot of brain injured patients. Details can be found on our website.

We can help you and your clients: can you help us?

Please help us in the following ways:

  • Visit our website: www.braininjuryisbig.org.uk 
  • Tell your clients about us – we are there to help. Our helpline (9.00 am to 6.00PM) can be reached on: 07902 770 999.
  • Consider whether you can justify a grant application for a client or your organisation – we have strict guidelines and criteria but we try to help as many as possible.
  • Offer us your expertise – we are always looking for skills and knowledge in the world of brain injury.
  • Support our events. Our next charity ball is in Dorking Surrey on Saturday 16th November 2024. Details will be on our website soon – but save the date.

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