Imogen May communication aid appeal - further information

It is understandable that you may want to know what else has been tried, before donating to Imogen's appeal. The explanation is somewhat lengthy, so please bear with it!

What other avenues have you explored for funding?

To answer this question fully it is necessary to look at two parts.

"Why can't the NHS help you?"

The NHS provide a laminated alphabet sheet for immediate communication and while they do assessments. However, they have no budget for adult communication devices. The only way an adult can receive funding from them in this situation is by going through their Exceptional Circumstances Board who consider the case and then decide whether they can provide any money (not necessarily all) towards the equipment needed.

This process takes a long time; firstly gathering medical information, then waiting for the board to sit (once a month in Cambridge), obtaining quotes from various companies, and then finally waiting to make a decision. Once this happens it can still be a few months before the money comes through. The whole process takes up to 18 months.

Imogen's Speech and Language Therapist (SALT) has been extremely supportive of her need for a high-tech communication aid, but is unable to provide anything more without going through this process. Her SALT is currently working to gather medical information in order to approach the the Exceptional Circumstances Board and kick off the process, but there is no guarantee of success and in any case, any funding they provide would take months to come through.

Imogen needs to be able to communicate right now.

Since losing the ability to speak, her life is on hold. She is a 26 year old woman on a degree course with an active social life, and as well as feeling isolated and having a poorer quality of life without being able to converse with people, there is also a safety risk - Imogen has a complex medical condition and it's important that she is able to communicate quickly and effectively with her assistants and doctors. There is no time to wait - Imogen had to start fundraising right away. If the Exceptional Circumstances Board are able to provide any funding at a later stage, it will be a bonus and can go towards an eye-gaze add-on for the communication aid (see below).

"Haven't you applied to charities for help?"

The answer is YES - Imogen has been awarded £1000 from Cherryhomes which has gratefully been added to the running total.

However, charity grants are not an instant or complete solution. When it first became apparent that Imogen needed a high-tech communication aid and that the NHS could not fund it, she and a number of friends investigated the possibility of charity grants.

Several issues immediately arose:

• It was very hard to identify charities for whom Imogen met the criteria. Groups which give small grants tend to have very specific requirements (e.g. which postal code you fall under, your age, which school you attended or the career you follow, which illness you have, etc.) As Imogen is aged 26, she is too old for the many charities which support children and young adults - 25 is the upper age limit. She does not have a career, nor a definite diagnosis of her condition, which makes it very hard to find charities to which she is eligible to apply. If you can think of a suitable group, she'd be pleased to hear from you at funds@imogenmay.com.
  


• Nearly all charities require that you have exhausted all possible alternative sources of funding. In Imogen's case, this means that she is expected to have gone through the NHS Exceptional Circumstances Board process before they can consider her. In addition, some charities require a clear diagnosis of your condition. Imogen has a complex medical situation, experiencing dystonia-like symptoms (uncontrollable muscle spasms) as well as having an overall condition similar to Muscular Dystrophy (muscle weakness and wastage). However, despite muscle biopsies and other tests, it has been impossible to determine Imogen's condition exactly. It is thought that she may have one of the very rare forms of Muscular Dystrophy but so far she has no definite diagnosis.
  


• As with the Exceptional Circumstances Board, charities can take time to provide funding. Many meet just a few times a year and so the next chance for your case to be considered can be many months off. The charity may then require additional information, however even after a decision is made it can be some time before the money is received, particularly from smaller groups which have less frequent cheque runs. Time is of the essence for Imogen and she cannot afford to wait, but has had to kickstart fundraising on her own initiative.
  


• Charities have limits on how often the same person can apply to them. Imogen is aware that she will soon need other equipment, such as a new wheelchair (again, it is custom made and high-tech) and would prefer to keep any relevant charities as a fall-back so that she is free to apply to them for other equipment as necessary. Her illness is progressive, so it is sensible to plan ahead for future needs. Apart from the wheelchair, she is likely to need an "eye-gaze" add-on for the communication aid, so that she can control it with her eyes rather than her hands. This will cost a further £7000. Obviously when planning ahead, there is time for a more measured approach both in applications and in waiting for the outcome decisions, so it makes sense to reserve the possibility of charity grants for Imogen's later needs if at all possible.

Hopefully this information has been of interest, however if you have any questions please contact Imogen via funds@imogenmay.com.

Please donate if you can.

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