We need to talk about…Peer Support

390E0AD5-0F2B-48E4-9D89-EAD35D672914

There’s a lot of talk about Peer Support at the moment.

The Q community is working on it.

There was a Peerfest” day in Wales the other day.

NESTA produced a report a few years ago analysing what works.

https://www.nesta.org.uk/sites/default/files/peer_support_-_what_is_it_and_does_it_work.pdf

And there are lots of other resources for learning about it.

So what is Peer Support?

AE9F1E06-23AB-407D-88E4-1FD32803216A

Wikipedia: “Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”

I like that.

Note the “or”. You don’t have to be a trained expert for peer support to work. Just need to have lived experience and a degree of emotional intelligence and self-awareness.

At the upcoming UK Dementia Congress in November in Doncaster, there are several sessions devoted to early stage dementia, young onset dementia, and what support people living with dementia want.

I am part of the DEEP network, which has over 80 peer support groups are ind the country. DEEP is Dementia Empowerment and Engagement Project. It’s fab.

And I have started two DEEP peer groups in Shropshire. ‘Cos there’s nothing else for early stage dementia.

3EF356F3-86E7-48C4-8BE3-C4E41CA415EF

What do we talk about?

If you’ve ever been to a group of people living with dementia you’ll know that conversations are chaotic but huge fun. We drift in and out of conversations. We start sentences we can’t finish. We are totally random at times.

And the great thing is? It doesn’t matter a damn.

We talk about holidays and visits. The Memory Service or taking pills. Cakes and favourite foods.

We grumble a little sometimes about our spouses or families, how they choose our drinks and meals, finish our sentences, speak for us.

And we just laugh at the absurdity of it all.

Oh and we always have a ritual of checking the date of the next meeting, because we often forget. One of my friends emailed me late last night apologising for forgetting the meeting yesterday. Which wasn’t yesterday, but next week.

Happens all the time.

We all need iPads or tablets and to use those calendars! And reminders.

We help each other with smart phone or tablet difficulties.

And when we leave, after cake, coffee or tea, we are uplifted. Ready for the next s**t coming our way.

A55F60AF-4856-4D18-8C28-6811B3829441

“Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”

I’ve been at several meetings in recent months where I’ve promoted the idea that for early stage dementia peer support groups are the thing that really makes a difference. And that they’re cheap to run. And that basically unless there’s some nut like me willing to organise a group it takes a little facilitation time to get one going.

That’s cheap. It’s cost effective. It’s what we want.

Until you’ve joined one you don’t know how supportive a peer group can be. And you look around in Day Dementia cafes, diamond cafes, forget me not cafes…and think, oh god, not yet. I can’t stand those. I do not want to spend time with people with later Dementia, playing games and drawing.

Sorry. It just isn’t for us.

We want, no, we need to be out and about. Chatting, shopping, walking, drinking…whatever it is that makes us/you happy. That helps us get over the everyday little that happen.

The empty boiled kettle. The miserable feeling of loneliness. The lost screwdriver. The forgotten name. And the memory of what we once were and did but now cannot.

So let’s hear it for peer support. And if you do nothing else this year, lobby your commissioners to pay the small amount that a facilitator would cost for starting peer groups in your area.

Perhaps I’ll see you at the Congress. I’m chairing one of the sessions. Make sure you say hello.

9EA51C36-A4E3-43DF-8DAB-856295F22AF7

Its the job, stupid

Does dementia matter?

I am increasingly annoyed about why the majority of clinical staff do not see that caring for dementia is part of the job.

It’s as if… no, it really is that they are trained and developed during their working lives to do the traditional physical clinical work. To deal with the diseases and trauma they see every day.

So, pneumonia, cancer, prostatitis, back pain, arthritis, and everything else…these are what nurses, therapists and doctors do. They diagnose, treat, discharge.

And they’re really good at this. They’re professionals.

And they know and recognise that many patients have more than one condition. Multiple co-morbidities.

So for example, they’ll check blood pressure, diabetes, heart disease, and make sure the interdependencies and drug effects don’t conflict.

They’ll check that my eGFR is high enough to allow me to have an angina drug which might damage my kidney.

But it seems that the brain disease that causes dementia symptoms is not recognised as something they should know about and be able to react to and treat appropriately?

25% of inpatients live with dementia. But (I guess that) no more than 5% of staff really know how to provide appropriate care and conditions for them.

Oh I know that induction programmes for new staff will include half an hour on dementia, perhaps a short guide to the Butterfly Scheme.

IMG_0335

And there’ll be an e-learning module somewhere…which is a complete waste of time. No, it is counter productive, because it will certify that the staff member has done dementia training that year.

My acute trust says that over half their 5,000+ staff have had dementia training. Hmm.

Inpatients living with dementia stay in hospital for some 30% longer than others. They more often are discharged into a care home, because they have been disabled and infantilised by their stay in a ward, and because their capacity to adapt to living in a hospital is severely reduced, which impacts their recovery. And then discharge teams won’t take the “risk” of returning them to their homes.

The cost is staggering. The insult to those patients is appalling.

If all clinical staff were really properly trained, and if they all addressed patients’ needs related to brain disease, as well as their other conditions, there would be shorter stays, better health outcomes, and reduced social care costs. Not to mention improved quality of life for the patients.

But no, dementia is not what we do. We do diseases. We do traumas. Injuries.

Well… get real.

Dementia results from brain disease. Physical brain disease.

And it’s your job!

It’s not an add-on.

IMG_0336

It’s not an option, which can be ignored when times are difficult.

You can’t pick and choose.

Caring for someone, healing someone, is about the person.

You can’t cure the brain disease that causes dementia symptoms. Bu you can make sure you provide care in the right way for that person, and not in a single standardised way, the same for everyone, and good for no one.

If you ignored co-morbidities when treating a condition and your treatment killed a patient you’d be struck off.

So don’t ignore the brain disease.

It’s the job, stupid.