Tag Archives: independent

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A person newly diagnosed with dementia has a question for primary care, and primary care should know the answer

GP seeing his patient

Picture this.

It’s a busy GP morning surgery in London.

A patient in his 50s, newly diagnosed with Alzheimer’s disease, a condition which causes a progressive decline in structure and function of the brain, has a simple question off his GP.

“Now that I know that I have Alzheimer’s disease, how best can I look after my condition?”

A change in emphasis of the NHS towards proactive care is now long overdue.

At this point, the patient, in a busy office job in Clapham, has some worsening problems with his short term memory, but has no other outward features of his disease.

His social interactions are otherwise normal.

A GP thus far might have been tempted to reach for her prescription pad.

A small slug of donepezil – to be prescribed by someone – after all might produce some benefit in memory and attention in the short term, but the GP warns her patient that the drug will not ultimately slow down progression consistent with NICE guidelines.

It’s clear to me that primary care must have a decent answer to this common question.

Living well is a philosophy of life. It is not achieved through the magic bullet of a pill.

This means that that the GP’s patient, while the dementia may not have advanced much in the years to come, can know what adaptations or assistive technologies might be available.

A GP will have to be confident in her knowledge of the dementias. This is an operational issue for NHS England to sort out.

He might become aware of how his own house can best be designed. Disorientation, due to problems in spatial memory and/or attention, can be a prominent feature of early Alzheimer’s disease. So there are positive things a person with dementia might be able to do, say regarding signage, in his own home.

This might be further reflected in the environment of any hospital setting which the patient may later encounter.

Training for the current GP is likely to differ somewhat from the training of the GP in future.

I think the compulsory stints in hospital will have to go to make way for training that reflects a GP being able to identify the needs of the person newly diagnosed with dementia in the community.

People will need to receive a more holistic level of support, with all their physical, mental and social needs taken into account, rather than being treated separately for each condition.

Therefore the patient becomes a person – not a collection of medical problem lists to be treated with different drugs.

Instead of people being pushed from pillar to post within the system, repeating information and investigations countless times, services will need to be much better organised around the beliefs, concerns, expectations or needs of the person.

There are operational ways of doing this. A great way to do this would be to appoint a named professional to coordinate their care and same day telephone consultations if needed. Political parties may differ on how they might deliver this, but the idea – and it is a very powerful one – is substantially the same.

One can easily appreciate that people want to set goals for their care and to be supported to understand the care proposed for them.

But think about that GP’s patient newly diagnosed with dementia.

It turns out he wants to focus on keeping well and maintaining his own particular independence and dignity.

He wants to stay close to his families and friends.

He wants to play an active part in his community.

Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different.

Once you’ve met one person with dementia, you’ve done exactly that: you happen to have met one person with dementia.

Care and support plans should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person. It’s going to be, further, important to be aware of those individuals’ relationships with the rest of the community and society. People are always stronger together.

And technology should’t be necessarily feared.

Hopefully a future NHS which is comprehensive, universal and free at the point of need will be able to cope, especially as technology gets more sophisticated, and cheaper.

Improvements in information and technology  could support people to take control their own care, providing people with easier access to their own medical information, online booking of appointments and ordering repeat prescriptions.

That GP could herself be supported to enable this, working with other services including district nurses and other community nurses.

And note that this person with dementia is not particularly old.

The ability of the GP to be able to answer that question on how best her patient can lead his life cannot be a reflection of the so-called ‘burden’ of older people on society.

Times are definitely changing.

Primary care is undergoing a silent transformation allowing people to live well with dementia.

And note one thing.

I never told you once which party the patient voted for, and who is currently in Government at the time of this scenario.

Bring it on, I say.

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I bought today my own book "Living well with dementia" at a bargain price from Primrose Hill Books

I got a bargain today.

I have been quite a good mood recently, getting ready for my book launch in Camden on the afternoon of February 15th, 2014. We’re all going out for dinner in Pizza Xpress later that evening, somewhere in Central London.

shibley rahman living well with dementia

I bought my own book ‘Living well with dementia’ from Primrose Hill Books for the very much discounted price of £16.99.

This is not because it was a soiled copy, or because I was the buyer.

It was because they had ordered it in especially from the wholesalers, and managed to sell it onto me a very much reduced price.

Receipt 2

Of course I am very grateful, as I think it’s important to support local independent booksellers in the community.

Here’s a good piece from last year on ‘five reasons to support your local indie bookseller‘.

Here are the full details of ‘Primrose Hill Books’. They’re on the main road which passes through Primrose Hill. This book is called Regents Park Road.

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Nonetheless, I appreciate that some people will prefer to use the bigger well known book retailers, especially if they do not time to browse or travel to such bookstores.

After a bit of haggling, we got Amazon this afternoon to reduce their delivery time from 9-11 days to fewer than 24 hours. This is of course a huge result for me. Their page on my book is here.

Book cover

The Blackwells Bookstore is normally a good place to find the book for immediate delivery, but not at the time of writing this blogpost. The book is currently out of stock, but I do know reliably they had a good stock once upon a time. Here is their page.

But Primrose Hill Books will always have a special place in my heart. I’ve bought books there I’d never have ordered on Amazon, for example, through browsing.

It’s run by Jessica and Marek (and Kelly is often there too). All three have an enclopaedic knowledge of current books, some well known, some not so well known.

Of course, it was a source of great pride to see my book there. I’ve published specialist textbooks, but not the type which would look in place in the bookshop above or any other high street bookseller.

Here’s Jess looking at the book.

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She said it was a good book, and we had a discussion of how long it had taken me to write (a year),  how this had become a real passion of mine to share this information and to dispel all the scientific misinformation about dementia, and how it was written in the style of a long blogpost but it actually contained a lot of interesting contemporaneous evidence and discussion.

It is of course a bit weird to see the book alongside classics such as Ben Goldacre’s “Bad Pharma: How medicine is broken, and how we can fix it” and Naomi Wolf’s “Vagina”. But hey ho.

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You can buy the book from the publishers’ website too.

Their is their official flier. You get 20% off if you use the promotional code ‘AUTHOR20’. You enter this code apparently just when you are completing the ‘checkout’ in this e-bookstore.

And finally, one of the people I genuinely admire the most is Tommy Whitelaw (please support Tommy at “@tommyNTour“).

You can read about Tommy’s campaign for giving carers ‘a voice’ on my blog here. His story continues to motivate me very much – and not just because he’s a Glaswegian like me!

Tommy is very honoured that his campaign and letters in Sally Magnusson’s Book “Where Memories go”.

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Hopefully the episode where Sally talks to Tommy in “Medical matters: caring for carers” will be made available on the BBC iplayer shortly.

And finally – here’s Sally’s book on the Hodder website.

All in it together, and all that.

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