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

[Crazybaglady]

Sick Of Cell Pain clinic? I'm useless sorry.

You need to get in your targets audience head and make them take action. Think deeply of who you need to appeal to. What can you do to make them take action? Sorry I'm so rubbish

[hiddenhome2]

A text advice service? Texting is often easier than phoning a helpline.

[Flingingmelon]

I was going to suggest 'Resilience' but then I saw Crazybaglady's suggestion and now I'm off to get my coat

[Flingingmelon]

Could your Facebook page work as a forum? If your potential clients are hiding at home it might be a good way of making contact and getting them to support each other without bringing their walls down.

Works round here...

[Whoputmeinchargeofthenhs]

Crazybaglady not rubbish at all!! grateful for any and all thoughts! The texting and Facebook ideas are definite possibilities, though there are limitations and also NHS red tape we are facing about even getting the blinking things set up but yes we'll explore that further
Thanks, keep em coming please!

[EnriqueTheRingBearingLizard]

KOSCD ? or Kick SCD.

Kick Out for the first two initials, although SCD is a well known abbreviation for Strictly Come Dancing too, so may lead to confusion.

You can register and maintain a domain name for a few pounds a year and power a webpage via google sites. It's easy to edit and maintain on a daily edit basis and could give very up to date info for one clear click.

[Puzzledandpissedoff]

Sickle-Ease for the name, perhaps? Or the Crescent Clinic?

Your logo could be a figure lounging within the sickle (crescent) shape - sort of using it as a back rest, to suggest relief of pain and greater comfort?

I'm wondering if the relevant community have some sort of dedicated leisure centre in your area, or even a special carnival or similar? Both could be useful places to send/distribute leaflets to raise awareness - with the logo/contact details prominently displayed, of course

[OfficeGirl1969]

Not sure if it's daft idea or not but with the connection with Africa/Caribbean, how about using a word from an African or Caribbean language meaning strength/resilience or similar (quick Google gave me "Teko" from the Saharan Luo dialect, meaning "strong" but maybe some patients might have better/more appropriate suggestions.......?

[madsaz76]

How about some experience based design? Engaging with the clinic population may reap massive benefits - there have been great examples of this kind of work - especially in a lot of young adult/ transition clinics....

www.institute.nhs.uk/quality_and_value/experienced_based_design/the_ebd_approach_(experience_based_design).html

www.kingsfund.org.uk/projects/ebcd

Facebook etc a bit difficult as you end up needing to moderate it - unless you have it as a patient led group with volunteer moderators - you don't want to be doing it.

I have also put the link for some of the person centred care stuff from the health foundation personcentredcare.health.org.uk/renal. THe renal clinic at Salford was set up by friends of mine and involves some really great stuff like collaboration with employers and advice from education etc

good luck!

[Fizrim]

Are there any community groups that could help you publicise the service?

[Rezolution123]

OP What about starting a discussion on PatientForum? (online)
I joined it this year to find out more about a health problem of my own and found it very supportive and really user-friendly.
They also offer information pages about various illnesses (some common but some less so)

[UndramaticPause]

Ignorant corner over here but why is the pain clinic specifically for sickle cell? What's different about that condition to other chronic pain issues that mean they can't be dealt with under an expanded generic clinic?

[WhyCantIuseTheNameIWant]

Trying not to sound racist in any way..

Are there areas where you have a high proportion of black African/ Caribbean people?

Is there a sort of preferred clinic/shops/school/house estate ?

You could get flyers delivered if there is.

Also, contact local hospitals, clinics, midwives etc, ask them to pass on business cards or leaflets

Agree that digital is good. Texts, emails, reminders...

Can you run an 'open surgery'? Walk in type of thing. So if I was sick and missed an appt, I wouldn't have to wait for the next one, I could just call in tomorrow instead.

And if I bring my friend with me, she can start to trust them too.

[eastwest]

Have you considered sending out a press release to publications targeted at black African/ Caribbean backgrounds? For example, The Voice. They cover community-type issues. you could even take out a banner ad on The Voice online, depending on your budget.
I would probably contact groups that work with this section of community even if they are not health-related, because they would probably pass on information about something with such an obvious benefit to their users.
In fact! (has a brain wave) - could you run a competition to 'Name That pain management service' - get business to donate a prize or two (contact black African/ Caribbean-owned businesses in particular?) and put out a press release to radio, TV, press etc. ? Then there is a news angle that they can latch onto and you kill two birds with one stone.
It is such a good thing that you're doing, I should think people would be keen to help as much as possible.

[MyNameIsInigoMontoya]

SPAIN (or S-PAIN)?

As for engaging people, if it's possible, an easy way to do this would be if you can somehow "piggyback" onto people's other appointments. If they are having to come to the hospital a lot already, I can understand it being a drag to have to fit in extra visits especially when feeling ill. But if you can somehow co-ordinate with the others so you can either catch people while they're hanging round the waiting area, or have them passed on straight from their other appointment to you, that would save them a lot of time and hassle.

A support forum sounds like a good idea too. Or there may be some existing ones you can link up with?

I'm guessing home visits are not easily manageable (funding constraints etc)?

[Gruach]

Interesting. (I don't have a sensible suggestion, I'm just thinking aloud ...)

There's no indication of this in your own posts OP but I'm sensing from other posts some assumption that the people affected form some sort of homogenous group. Which is obviously not the case. I imagine that anyone affected by this horrible disease would very much not want to be approached or targeted in any way that negates their individuality or that assumes their membership of some spurious and nonexistent "community".

[Whoputmeinchargeofthenhs]

THANK YOU SO MUCH!!! Am overwhelmed by the responses so far. Will have a proper read through in the morning (brain is a bit addled now) and respond to a some specific points but you've really cheered me up and helped with some really great practical ideas. Am loving the 'name the service' competition! Thanks all xx

[Whoputmeinchargeofthenhs]

Am liking the crescent clinic too and the idea of the person being supported/ able to lean on the crescent.
Honestly. I should have asked you lot sooner!

[ItsANewDayToday]

Honestly, I think Sickle Cell Pain Management Clinic is perfect! If I wasn't sure what you were called and I was googling I would be able to find you. If you called it anything else I wouldn't.

A 'name' might sound nicer but it's confusing and it might make people think you are not part of the NHS but are a separate rather than integral department.

What about talks in local school as a way to get the message out to the wider community.

[cleaty]

Talk to community or voluntary groups that work with Caribbean people. If you find a few people who know lots of other people, they can encourage others to attend.

[Mmmmcake123]

I like crazy's suggestion. It may sound like it is trivialising the issue, but could be perceived as warm and welcoming, how about 'the sick 'o' cell pain clinic' with a serious underline header, eg 'we can help you to manage your pain from scd'.
You could ask local people how they would perceive it.
Texts all the way....
Good luck in providing good care xx

[ItsANewDayToday]

Im also not sure about the use of a crescent - it's a symbol that's synonymous with the Islamic religion and certain countries flags? Might that also confuse people?

I'd keep it simple and clear.

[Gruach]

Talk to community or voluntary groups that work with Caribbean people. If you find a few people who know lots of other people, they can encourage others to attend.

Extraordinary ...