Future of Health Conference

November 23, 2014 at 7:11 pm | Posted in rheumatoid arthritis (RA) | 4 Comments

Oh boy, what a day. What a weekend in fact, but for this post I’ll concentrate on the conference itself! The key theme of the event was ‘involving people with lived experience’ aka patients and carers, in the decisions of the NHS – not something they’ve exactly been famous for in the past. When the NHS was founded in 1948, doctors was gods, nurses were dogs bodies or angels (depending on whether you were a doctor or a patient), and patients … well, so long as they did as they were told and didn’t question the gods, all would be well … wouldn’t it? Sadly 50 plus years have proved that that model doesn’t function too well, but things have been slow to change in the culture of the NHS. That’s why there’s a demand in the five-year plan for a fundamental cultural shift in the NHS – but cultural shifts are far, far, far easier said than done!

Anyway, this isn’t a history of the NHS – it’s a post about the conference – or that’s the plan. So I won’t post about the state of my knees after standing at the hotel check-in desk for half an hour the night before trying to work out why they thought I was Anya de Iongh (a.k.a. The Patient Patient) (nope) and was sharing a room (NOPE!!!) and needed a wheelchair accessible room’ (nope, hello … I’ve been standing here for half an hour … but I’ll take anything you’ve got at this point!) The answer was of course that the organisers had sent me the wrong check-in info. When Anya arrived later she was told they didn’t have a room for her at all – but they found one in the end. Another lady needed an ‘accessible’ room and didn’t have one – sorry Gillian, if you read this! Anyway, didn’t I say this post was NOT about that? Come on Polly Penguin, stick to the point.

This post is also not a whinge about the multitude of other little organisational problems that should not have occurred, except to say that Jess Weller did a fantastic job considering she was a temp called in at the last minute to sort out the involvement of people with ‘lived experience’. Hang on though – wasn’t this conference supposed to have ‘people with lived experience’* at its heart? Weren’t we told (a few times) that we were the most important people there? Really? Then why was it left to a hard-working temp to pull us all together at the last minute? Hang on – it’s not a post about that either, is it – get to the point woman, was there a conference or wasn’t there?

Well yes, there certainly was, and it went way beyond my expectations; it was fascinating, life enhancing, buzzy, positive social and fun – as well as a very informative day.  It was divided into five sessions, a morning and afternoon plenary session (everyone attends) and then a choice of four or five sessions one could attend for the other slots.

The people’s panel (as the 46 or so of us with ‘lived experience’ of long-term conditions were designated) had a room to ourselves to use before, after and in between sessions, which was inspired idea, guaranteeing us a chance to rest, relax, regroup, network and SIT. We also had tea and coffee in there and many ‘helpers’ – anyone with a blue or white sash was a helper, ready and willing to help with anything from ‘Where’s the nearest loo?’ to ‘Isn’t there any decaf coffee?’ to ‘I don’t feel so hot …’ or indeed ‘I’m freezing cold’, and they were absolutely terrific! Thank you all!

We had a briefing in there before we started, which was very helpful and useful and encouraging and stress-reducing. However, the lady doing it (Lizzy I think?) forgot to tell us that we should all sit in the front two rows in the reserved seats, and in fact only ten seats were reserved for the nearly 50 of us. Oops. Glad to say that when I mentioned this to a helper, the problem was sorted out in time for the afternoon plenary session.

For the morning plenary, Ceinwen Giles, the spokesperson for the People’s Panel, opened the meeting with a terrific and very moving intro, and then she and the aforementioned Anya de Iongh ‘interviewed’ Dr Martin McShane and Simon Stevens (Chief Exec of the NHS). Between them the two ladies charmingly, gently, wittily and diplomatically gave the two gents a right good grilling about how much (or otherwise) things had improved since last year, and how much (or otherwise) Dr McShane, NHS England’s Director for People with Long Term Conditions, had been involved with patients and carers, given that last year he had promised to meet the people’s panel in a pub for an open and honest chat … and Anya was still awaiting the meet-up a year later!

The people’s panel then gave the two men a further grilling but the comment that got most people tweeting I think, and thunderous applause, was Lynne Craven’s question. One of the themes for the day (although I didn’t attend any sessions about it) was ‘the activated patient’ in other words, trying to get patients more interested in and committed to making choices about their own care. It was acknowledged that we were all ‘activated patients’ or we wouldn’t be there. Lynne asked ‘As an activated patient, can you tell me where I can find an activated clinician?’ It brought the house down, and I have to say that the very pleasant Suffolk GP I was sitting next to (i.e. a clinician and not one of the people’s panel) was one of the first people to start applauding! Clearly he was an activated clinician – but the problem is that while everyone at the conference was ‘activated’, plenty of people in the NHS aren’t. One of the big themes was around the necessary cultural change in the NHS and social care, and indeed in the two being much more integrated. In fact Andrea Sutcliffe from the Care Quality Commission did a great talk later on in the day that covered this very thing and she had a really good post about the 5 year forward view, but it’s gone! There’s now a much briefer comment about it on their site, linking to the report, here. Thank you ‘Mrs Mooseface’ for pointing out the broken link in the original post!

I was allocated three sessions to attend – at the last minute one of the sessions had to be cancelled but that was my lucky break, as it meant I got to attend one about biosimilars!

The first session was “Personalisation: What the NHS can learn from social care”. Thanks to another one of those unavoidable last-minute changes (no criticism to anyone here, these things will happen!) I got lucky again and one of the people’s panel speakers happened to be an RA patient (and all-round good egg) Nazreen Bawa,  (who I also ended up sitting with at lunch, along with Chris Freer, MS sufferer and Centre Manager at Joseph’s Court, an MS Resource Centre). Nazreen was originally supposed to talk in a different session. She gave an impassioned talk on how hard she’d initially found accepting her diagnosis, and how little help she’d received early on in this from clinicians. A little way down the line though she’d found the strength to set up an RA support group in Cambridge, with the help of NRAS, and she’s very keen on empowering patients to manage their own care as far as is possible.

Dr Clare Corps then gave a very good talk about her dual role as patient (since a very young age, with complex long-term needs) and a medical researcher. At one point Clare was rushed into hospital and was on a ‘nil by mouth’ and had to talk the doctor into giving her IV fluids as she was ‘running on only one kidney, and that’s second hand’. The doctor agreed, (grudgingly as after all what did Clare know – she was only the patient) and that probably saved her life! This was a common theme running through the day – but there were positive stories too and Nazreen mentioned that she considers her GP a partner in her care, along with herself.

An amusing moment in this session was that I realised the man next to me was also a ‘citizen journalist’ i.e. tweeting about the conference, and, looking at the tweets I saw coming up, I thought I recognised him. He thought the same about me. He pointed to a picture of Karen Maskell’s tweet, pointed at me and looked questioning. I shook my head and pointed to the one I thought he was and he shook his head too! Twitter photos are not too helpful for ID! We told each other who we were later and he was Don Redding, working for National Voices.

I asked a question in this session but no one actually heard it properly because the microphone didn’t work … or I didn’t work it right … and I forgot to say who I was too! Doh! Can’t remember what it was now.

Then another quick break and off to the next session, on biosimilars. I’m embarassed to admit I didn’t know what a biosimilar was before the session – but I do now! This is worthy of a post of its own though, so I’ll leave it for now as this post is outrageously long! I will just say that a Nurse Practitioner from my own local hospital was speaking at this one, which was a surprise! (I’d never met her, mind you … probably a good thing as I don’t go advertising my ‘real identity’ madly to people in the local GP surgery or hospital.)

By the next session I have to admit I was flagging so my tweets lessened a bit, but I was determined to stay the course and see the wonderfully entertaining Ben Goldacre in the final plenary! The session was ‘Barriers to Service Integration: Why Aren’t We Just Doing It?’ Frustratingly I missed most of the first talk, from the people’s panel members, but there was an excellent talk from Andrea Sutcliffe of the Care Quality Commission, and Luke O’Shea, Head of Patient Participation, NHS England had a great sound bite (and very true comment): Let’s focus on what matters to people, not what’s the matter with them. In other words, if someone has complex issues around health, housing, care etc. put the focus on the things that worry them, not the things the system wants to do for them. Andrea Sutcliffe was hard-hitting, especially with this slide:

That leaves a scary amount of work to be done, doesn’t it? But at least the problems are being recognised.

Professor David Haslem, Chairman of NICE, also spoke. He astonished me by not having either two heads or very red skin and arrow-shaped tail – in fact he seemed positively human and eminently sensible. He’s only been Chairman of NICE since April – so either this is fresh hope for NICE or the poison chalice of a job will get him in the end … . Hopefully he won’t leave his post with a distinct change in complexion and tail-like appendages.

By this point I was literally shaking with cold and tiredness but still managed to enjoy Ben Goldacre’s session. Here are some tweets to sum it up. For them as don’t know, Ben is a junior doctor, accomplished journalist and author of Bad Science and Bad Pharma. The first is hilarious – the second is on my wish list but I’m sure it’s just as good! His talk was about ‘Big Data’ – or how to use data better.

As you can see – I was really losing the plot by this point, so it was a pity I then had to wait 30 mins for a taxi that never came and then stand all the way to Hampstead Heath from Olympia on a packed like sardines overground train! I did, however then have a lovely evening with my aunt Judy and her husband Cyril – delicious meal and much relaxation – just what the doctor ordered!

 

To sum up:

Themes of the Conference

  • Integration of health and social care
  • The ‘activated patient’
  • Cultural change in the NHS
  • Putting patients at the heart of the NHS (where you’d kind of think they’d be – it can’t run without them after all …)

Positives

  • Met some great people
  • Learnt a whole lot about biosimilars, something I knew nothing about
  • Came away feeling hopeful that at least the problems were being recognised by some
  • Know a bit more about how the NHS functions (or limps) at the moment and a whole lot more about the ‘five year forward view’

Negatives

  • Although I wasn’t personally involved last year, there was a strong feeling that more could have been achieved since then for patient involvement
  • Improvements in patient involvement were strongly believed to be necessary by everyone there I think – but what about all the people that weren’t?
  • Organisation, organisation, organisation. (This doesn’t meant that I think I could have done it better – just that I think it could have been done better!)

* Sorry, I can’t use this phrase without quotes because it sounds so artificial and is in fact slightly ridiculous – what is experience, of any sort, if not lived?

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4 Comments »

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  1. Polly: Sounds like an amazing conference! What a special penguin you are to get to attend. I think your ideas are brilliant. Who do we have to petition to put you in charge?

  2. Lol, thank you Carla, but I REALLY wouldn’t want to be in charge! 😄

  3. Wow, what a thorough report! The cqc link doesn’t work any more though.

  4. Thank you Mrs Mooooooooose … I’ve put in a new link to the rather foreshortened entry they now have on there about it! I don’t know where the original has gone!


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