Recruitment began in November, and has been painfully slow – I understand from other battle scarred researchers that this is quite normal. It is frustrating when you know there is a lymphoedema problem out there, and you are desperate to reach them and offer a potential lifeline. We have been using various means of accessing them. The obvious one is to talk to the lymphoedema services, but so far we have drawn a blank. It is exceptionally difficult to get even a conversation going with the NHS staff at these services. The reason for this is they are completely overwhelmed with patients needing attention. It is therefore difficult to ask for more of their time – it isn’t as simple as saying ‘ GIVE US YOUR PATIENTS’. They need to make sure we’ll do no harm, and cause no additional stress to those already under stress. They may not be reluctant to help, they just don’t have the time to understand what it is we want from them, and they are not prepared to sign off on taking the risk that we may interfere with their patients negatively.
The other route is through the community and via word of mouth. This has been the most successful one for us so far. Local cancer services and community breast cancer self help groups have been a rich seam of interested individuals, and also a rich seam of people prepared to help us. They are often people who have been affected by cancer themselves, and/or had some reflexology which has helped them in some way. People power remains the way forward folks!
Anyway, this is where we are:
· Centre 1- 6 people recruited – 1 of these has already dropped out.
o 5 people have begun their measurement and will start their treatment this week.
· Centre 2– 8 people recruited
o 1 has been excluded due to physical issues
o 1 didn’t turn up, may do in the future
o 5 have begun their measurement
o 2 more signed up last week – measurement this week
· Centre 3 still hasn’t granted us full access permissions. We are at the stage where a total of 7 different forms have been filled out – many asking for the same information. Two newest forms will be completed today and sent off with accompanying documentation. Once permissions are granted then recruitment can begin in earnest at the final centre.
o NB – this centre is the only NHS site and the paper trail which has been required could fell a forest. The culture of litigation (or fear of litigation) has really taken hold. To the extent that nobody will sign anything unless they can’t be held responsible for anything from a trip over a carpet to a papercut – the most likely scenario, given the number of forms.
The temptation to climb to the nearest hill and scream ‘ WE’RE ONLY TRYING TO HELP PEOPLE WITH LYMPHOEDEMA!!!!!!!! ‘has at times been overwhelming.
Anyway, that’s it so far. I’ll keep you posted when the first results come in.