Tag Archives: NHS

The most surreal week yet…

This week I’ve got the most surreal week so far……
Monday: Channel 4 coming to the house to film for Channel 4 News (to be shown Friday evening)
Tuesday: meeting with NHS employers to discuss their plans for two Employer Toolkits. One is for employers to support employees with symptoms of dementia and the other to support those juggling work with caring for someone with dementia
Wednesday: working day but also deadline for an article for The Guardian newspaper
Thursday: London at the premier for Still Alice – meeting Julianne Moore for a chat and various reporters
Friday: just working – I think…

Saturday: filming me, Sarah and Gemma chatting round the kitchen table (obviously the one I’m looking forward to most:)))

If anyone had told me my diary was going to look like this a year ago I would have laughed very loudly. I suppose all the above have to come under the heading of ‘advantage of living with Alzheimer’s’. I’ll just try to take the opportunity to raise as much awareness of dementia as humanly possible in one week.

Any week is Dementia Awareness week in my book!
Any week is Dementia Awareness week in my book!

A day spent with leading researchers

I was invited to attend a workshop last Thursday at the Royal college of Physicians in London as a lay representative of Join Dementia Research – another WOW opportunity for which I’m grateful.
The workshop was attended by leading professors and specialists in the field of dementia research. The prospect was quite daunting but once we started to talk about the ‘slidy thingy’ on an IPad and they knew exactly what I was talking about, I settled down:) I also sat next to Professor Murna Downs, from the University Bradford so we were able to talk about her colleagues there, as I’ve been involved with them in the guise of Research Network volunteer for the Alzheimer’s society.
The aim of the workshops was to identify and consider new approaches to clinical research in dementia which could be taken forward by NIHR – National Institute for Health Research.

A leading researcher into cancer gave a talk on new approaches being adopted in the oncology world which was very interesting, after all, research into cancer has come on in leaps and bounds. There are quite obvious differences between the outcomes of cancer and dementia, but we have a lot to learn and a lot to gain from adopting and adapting some of their methodologies.
We took part in 2 workshops, both of which were very interesting – the language lost me some of the time – but I was able to contribute, put my point of view and was listened to. It was a fascinating day. I was privileged enough to meet some of the leading brains in dementia research and it was fascinating to see my world from their viewpoint.

The surprising outcome for me was that it highlighted 2 very concerning issues. I naively thought that there would be a close connectivity between the research community and the NHS – this doesn’t appear to be the case.. Whilst in selective areas there is a close relationship, in the majority there appears to be a very wide gap due to ethical concerns amongst GPs and NHS clinicians. The Researches described them as ‘protecting’ their patients from the research world. In my mind this is wrong – clinicians and GPs should give their patients a choice. It is not up to them whether or not a patient takes part in research. It should be the patients who are given enough information to be able to make an informed decision as to whether to volunteer.

It appears to be the classic ‘postcode lottery’ as to whether you live in an area that promotes and has research available. I personally think that the seed should be sown at the point of diagnosis or even before and regularly discussed as an option. After all, in the NHS, as someone who works there, aren’t we always talking about the importance of patient choice.

The second was the frustration that this brings both parties. The NHS has masses of data that would be valuable to researches – none more so than who has been diagnosed. I’m not saying they should ‘sell’ patient data by any means – definitely not – but, again, it should be down to patient choice. Public perception of ‘research’ seems to centre on clinical trials, but this is only one strand. Research is also ongoing into the care and prevention of dementia – how to live well with dementia. Researchers find it difficult to recruit volunteers and volunteers find it difficult to find research. This is where, hopefully, the new Join Dementia research database will succeed. Volunteers will register on the database to express their interest and researches will detail the research taking place. One can then be matched with the other and then enough information can be given to the volunteer in order to make an informed decision as to whether to take part.
A very interesting and enlightening  WOW day.

Dementia Friends Roadshow!

Helen Gilbert – Head Of Patient Services at Leeds Teaching Hospital, has just become a dementia champion. It is the same Helen that I mentioned on a previous blog – the Apple guru – who guided me through the maze of the iPad technology.

She is now about to embark on training all her managers on Dementia Awareness with the added twist of me giving the opportunity to deliver a speech at the end.  The training will not only be from the perspective of the patient but now from the employees perspective as well. Helen use to be my manager in our previous world, and has been wonderfully supportive since hearing of my diagnosis and is now doing everything she can to raise awareness.

Her decision to attend a Dementia Friends training session and becoming a Dementia Friend Champion was purely coincidental, as she was already aware of the need for training with regards to patients and only took on the stance from an employee perspective when she heard about me. At last, someone doing something positive and practical. As I’ve said before, I work for the NHS, in one of the largest Trusts in the country, employing 15,000 people. Statistics say that I can’t possibly be the only employee affected in some way by dementia.

The powers that be will only get brownie points from me if they put something into action, talking about it doesn’t count.

Well, Helen can have a bucket full of brownie points. She held her  first brilliant dementia awareness session  yesterday. About 30 managers attended. I also attended in my capacity as a team leader and interacted with the other managers during the session. At the end, Helen read out my ‘Memory Poem’ and then introduced me as its author. I stood up and announced that although I was use to standing in front of an audience of Ward Managers and Matrons as an expert in eRostering and staffing, I was standing in front of them today as an expert in Alzheimer’s. I went on to explain, as Helen had said, that dementia isn’t age related and isn’t just patient related. Our hope is that this was powerful enough to steer their thoughts around ‘awareness’ in general for staff and patients alike and acknowledging all age groups may be affected. I hope they went back to their areas with renewed vision. More talks organised for the New Year!

I’m sure they got lots out of the session – if you haven’t already become a dementia friend please sign up today – it’s so simple – web address below.



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*