The team at AstraZeneca are building a Patient Services Programme to develop resources to assist people with lupus in more effectively managing their condition.
They are seeking a small number of patient volunteers to participate in an ideas development session on 14th September 2020 via Zoom video conference. The session will be approximately 4 hours long, starting at 1pm. Any volunteers may also be required to have a 30min-1hour phone call with someone from their team in advance of the session.
AstraZeneca are keen for any of the volunteers to also enrol in their Patient Partnership Programme for an ongoing relationship where they can present future opportunities for involvement.
If you have a diagnosis of SLE, availability for the session on 14th September and you’re interested in being involved or learning more, please email me at paul@lupusuk.org.uk
Written by
Paul_Howard
Partner
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One comment for AstraZeneca, if I may - a 4 hour session is beyond me, and perhaps quite a number of others with Lupus who have severe fatigue but might like to be able to contribute in some way.
Thank you for your feedback MrsMouseSJ . I'll pass it along to the rep I've had contact with. I believe the logistics and agenda for this session are already planned, but it may help improve the experience for everyone involved if they make adjustments in the future.
Maybe Paul it might be an idea if they survey us and ask us how we could contribute and what we could manage before planning such sessions .....then they could factor in nap time 😴 planning a 4 hr session with people who have brain fog and fatigue shows how little they know about lupus x
Yes, forgot about the brain fog - due to brain fog!
And there's the whole issue of not being to sit in an 'alert posture' for very long, due to probably Fibromyalgia, TMJD, and post childhood accident issues with spine.
I think theyve gone about it the wrong way round... they should of asked us first before arranging and inviting .if they understood our illness theyd of done it that way.i also couldn't take in and process stuff for that long I often need time and to go over things repeatedly.also with the way our illnesses go there is nothing to say we would be well enough on the day .. we dont even know what we will be like tomorrow never mind in 2 weeks time.! Have they even thought about school runs 🤔 .theyve so much to learn x
I totally agree with you. But hopefully all the responses here give Paul Howard 'meat' to discuss with AstraZeneca, in order to inform any future plans.
That would be great, Paul. I was thinking that they would be able to change that which was already planned - but hopefully it may help guide things in future. Such that a broad section of Lupus patients would who like to be involved, might be.
I would struggle with 1 hour. I really don't think people know and understand this condition at all sometimes, and I hope they never have to. My sister also has SLE and sometimes we even struggle with a phone call and lose the thread of the conversation 🤔🤔🤣🤣. We can laugh together at this but people can look very frustrated when I can't get my words out and inside I feel I'm so useless. But then I just think 'you'll just have to wait till I can get the words out of the thing that passes as my brain 🧠 nowadays. Hey-ho start of another day but as my recently departed father-in-law used to say. ' at least I didn't wake up in a box'. He had a strange sense of humour. I will miss that. 😳😳 x
Hi Paul, is that one 4 hour session or a combination totaling 4 hours?
Most normally healthy people can only concentrate and focus for a maximum of two hours before needing a break. So for those who have health problems it's a very big ask let alone the brain fog factor.
I know that they are well meaning but it does seem as if it's not been thoroughly thought out wh
It is a single four-hour session. I've not seen the agenda for the session so I don't know whether there are significant breaks included within that time. I'm going to be feeding back to them about the length.
This particular project is to identify any areas where people living with lupus feel like they could benefit from additional services and support. It isn't related to a specific treatment but some things that may be suggested could include educational sessions for people who are newly diagnosed, smartphone apps for tracking symptoms, medication reminders etc, additional information that should be provided by doctors/nurses etc. It's very much a blue-sky thinking project that may result in developing new support services, perhaps in cooperation with health service providers or patient organisations.
I’d liked to have participated, but as others have already mentioned 4 hours in one sitting requires a lot of energy to try and stay alert, focused and engaged. I’m pretty sure they’d get more out of a 2 hour session, perhaps they could stagger participants? So they still get their 4 hour session, but with two groups, who changeover part way through? Just an idea😎
I agree with all 4 hrs far to long, also there are plenty of apps that track symptoms, medication reminders already. So can’t really see what they want out of this, as someone else said they should have talked to people first and done some surveys before going down this route
Those were just examples I provided in a comment to another post. I've passed on the feedback that we have received here regarding the length of the session.
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