Post diagnosis care sadly lacking

I was diagnosed on 31st July 2014. I thought there would be support available from the very start. After all, this was momentous news, so surely services would be geared up for such situations and would kick in immediately to support and advise me?

How wrong I was. At hospital, I was in the care of 2 wonderful doctors (a specialist registrar in neurology and a clinical psychologist)and my GP has always been very supportive. After diagnosis I was quite rightly discharged from the hospital and referred to the memory clinic – the perfect place to be referred, I was told. However, due to unforeseen circumstances the allotted Occupational Therapist had to cancel and already stretched resources meant no one was available to cover her cases. I finally saw someone on 7th October – doesn’t sound a long time to wait in the grand scheme of things in the NHS but for me it seemed like forever.

In the meantime, I turned to occupational health at work – after all I work in a hospital, surely they could advise me how best to cope at work if nothing else. Again, I had to wait 4 weeks for an appointment………….. Once I got to the appointment, it turned out that although it may be a good place for patients, it had no knowledge or experience of supporting employees.

Each person I’ve met eventually has been very nice yet openly admitted that they are not geared up to support ‘young’ people with Alzheimer’s. That first month post diagnosis is so important. It’s the time you need advice and support yet it wasn’t there.

Every which way I turned I seemed to hit a locked door and remember feeling abandoned and let down by the NHS. I’ve since found out, through reading and talking to others, that this is very common. Services are geared towards older people at a more advanced stage of dementia. Something will need to change. In the future I can see that more people will be diagnosed earlier so services need to develop news ways of support as the numbers diagnosed yet still in work can only increase.

As I hope you’ve realised, I’m very independent and resourceful. I trawled the web for information, but only had to look in one place for everything I needed initially – http://www.alzheimers.org.uk/   (A few blogs will follow solely about this marvellous organisation)

I was overwhelmed and felt totally relieved by the amount of information I found available on one website. I was also lucky to find some research being carried out by the University of the West of Scotland – ‘Dementia in the Workplace’. I’m working with Dr Louise  Ritchie and she and the rest of the talented team there are looking not only at the challenges faced by those of us continuing to work with dementia but also the perspectives of work colleagues and the challenges they face.

It’s only through research such as this that changes will take place so I feel honoured to be a part of this project which will help future generations.

*I’ve updated my gallery if you fancy taking a look*

 

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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