to cheekily ask for your advice...

[Whoputmeinchargeofthenhs]

I'm a long term mumsnetter but have name changed for this to keep my work and personal lives separate...

I work in a NHS hospital providing a pain management service for people living with sickle cell disease (a genetic condition with varied consequences including pain; it is most common in people of black African and Caribbean backgrounds).

We are facing a number of challenges and I'm appealing to the creativity and knowledge of mumsnetters to help me come up with a few ideas please

Firstly what could we called? Something better than the Sickle cell pain management service !! It doesn't need to next say what it is - could just be one word, maybe something associated with wellbeing and resilience??? And/Or a name associated with a good visual picture which could be a logo

Secondly could anyone help me think of ways to engage the population I might not have thought of? Although there is a lot of interest in the service (esp as sickle cell has historically been under treated), attendance rates have been lower than we'd like - partly cos people get ill and need to rest rather than come to an appointment, partly because they have loads of appointments, perhaps because there's a wariness or mistrust of new people... Numerous possibilities. We've done letters/phone calls/consultant introductions and are looking into Facebook etc but think we need to do more...

I have run out of ideas and really want to provide a good service for people living with this difficult condition so I'm appealing to the wisdom of mumsnet - please throw any and all ideas at me! Thanks so much

The Well Cell treatment hub. I'm useless sorry x

I watched a preppers programme once, and he said he hated the term 'survivor' and said he was a 'thriver'.....so, could 'thrivers' be a name?

there's radio presenter on bbc london whose programs talk a lot about ethnic minorities problems
www.bbc.co.uk/programmes/p001d7cn
(I am sure there are others too!)

I would call his producers when his program is on (or via email) and suggest yourself as a guest if you are in London.

I am sure BBC in other areas would equally be interested in hearing about your work.

OP, it's great that you're enthusiastic about this.

I've got close family who have been affected by this horrible condition. I've lost three cousins to it. A fourth cousin is fine thanks to a bone marrow transplant, but her treatment means she'll never have children of her own. She's still suffering from the psychological aftereffects of the unimaginable pain and suffering this condition caused her as a child.

I really don't want to offend, but I don't think that cute names like Sick o' Pain and the like are appropriate for a service like yours.

There's nothing wrong with just calling it the Sickle Cell Pain Management clinic.

And I wouldn't like a crescent logo either. It's these deformed cells after all that are the ones causing the agonising pain and life-threatening condition. Why would a sufferer or the parent of a small child in agony because of sickle cell disease see the crescent shaped cell as any form of support?

I do hope that you have some directly affected people to consult with these ideas before you take them on board.

Hello. Sorry not to come back to you all sooner (DD has been particularly unobliging today!!). I'm really so grateful for your time, ideas and thoughts and it's given me lots of ideas and things to think about and reaffirmed the importance of things like texting reminders etc. Just wanted to come back about a couple of questions/issues

Madsaz - thanks for the EBD links, I'm going to have a proper look at them tonight. If it's similar to what I've read before about EBD I think this approach has so much to offer. we have tried to include service users as much as possible in the design of the service. But we really struggle to get people able, willing and well enough to get actively involved. This ( having service user strong input) is really important to me though so we will keep trying

Undramatic pause - just wanted to come back to this question about why a separate pain clinic - in many ways it's very simple - many of the pain clinics local to us won't accept patients with sickle cell onto their programmes or see them at all - so until we got the specific funding they were not getting a pain management service at all (beyond the very good job the haematologists were doing - but that's not mdt input). We have very close links with our local generic pain service, and my background is is general pain management, but it is a separate service from funding etc point of view. The content of programmes etc is fairly similar but there are some very important differences (e.g. About what action is required in response to changes in pain) and I think it allows us to offer a more personalised service

Thanks for all your thoughts on names. I've taken on board the possible confusion of the crescent clinic. Will keep thinking. It has actually been patients and patient groups who have disliked the simple 'sickle cell pain management programme' and wanting something a bit less 'nhs' so we're wanting to take that on board.
I had wondered about something linking to a cultural idea but I think it's difficult and probably not helpful as, as others have said, this is not a homogenous group, it's a hugely diverse people from so many different backgrounds that I think it could risk isolating or being a bit crass so think we're best avoiding that. Our plan is to leave the choice to the patients, we just want some options to suggest in case we don't get many (any) from them

JUST GOT TO PUT THE CHILD TO BED.... Be back soon with the rest of my essay 😱

Just final words...

Thanks eastwest and antimatter and others for thoughts on publications and radio shows, I wasn't aware of these and very interested to read more

Finally passmethebiscuittin I'm really sorry to hear about your cousins. It really can be a horrifically cruel disease. I have taken all your comments on board and promise we will be checking everything out with our patients.

Sorry not to name check everyone but I have read everyone's contributions carefully and am grateful for them all - and if there's any more of course please do keep them coming