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Online network keeps kidney patients connected

Blog posted by: Tara Bashford, Outdoor activity instructor and kidney transplant patient, 01 July 2020.

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I am 23 and had a kidney transplant just over a year ago; it was given to me indirectly by my step mum through a chain of people. It only has 28 per cent functionality but that’s 28 per cent more than I had before! I’ve been able to travel to Jordan, France and Spain climbing and adventuring; I really appreciate what I’ve got and the difference it makes is insane.

Before that I had a failed transplant from my dad that lasted less than a day; then I had dialysis for 18 months with over 250 days as an inpatient; and I use that experience to help other people, through a network called CaMKIN – Cheshire and Merseyside Kidney Information Network.

Even though I am one of the youngest people in the group I have a lot of experience and it’s nice to be able to give that to people.

I have been using video calls on Attend Anywhere with my surgeons and transplant team, and it’s really effective. I was a test dummy for it – I usually am for these things! My consultant contacts me for appointments and when he wants to review the blood tests, he asks if I can jump on a call.

It took us an entire day to get it working! Then it was fine and we use it a lot; I’ve used the video link about nine times now as I’ve had a lot of blood tests and it means the consultant can keep an eye on me really easily. Otherwise it would be a 30 minute drive to the Royal rather than a ten minute call on a video link.

I travel a lot to lead outdoor activity expeditions so it will be great to use Attend Anywhere when Covid is over and I am travelling again.

I’ve been sick abroad a few times and it’s usually through email that I make contact but now I can video chat and can see my blood results by sharing screens; it is absolutely brilliant, fantastic.

I think in the initial stages of Covid, communication between hospitals and patients was pretty terrible but it all happened so fast that you can’t blame anybody for that; but now there is a system and a routine and a way that patients are worked with to make it safe, it has been a good outcome of Covid.

My only concern is the portions of the population it isn’t reaching, the elderly, those who struggle with technology or don’t have access to the internet.

I feel sorry for those who don’t have the technology or struggle to use it on their own as it can be difficult and I’m sure they can’t wait to get back into clinic and see someone face to face.

CaMKIN works because it’s local

I was on dialysis five days a week and already involved in different projects when I was asked to get involved in setting up CaMKIN and become a moderator.

CaMKIN is a private Facebook group; you have to be a patient, family member, carer or nurse in the Cheshire and Merseyside area.

Together with Greater Manchester Kidney Information Network – GMKIN – we have a shared website and joint Twitter and Instagram accounts.

I generate content and answer people’s questions; before Covid I met up with people for coffee and cake and generally support people when they are having a difficult time. The most important thing about it is that it’s local because there is a lot of support online for kidney patients and the online groups can be quite overwhelming with 10,000 members with lots of different opinions, patients, consultants and it can be hard to weed out the truth. As CaMKIN is small it can be moderated efficiently and people can get advice relevant to them.

The main transplant centre is the Royal Liverpool so most of us are patients there; some are on dialysis in satellite units in smaller hospitals.

There has been significantly increased traffic to CaMKIN since the start of Covid; the hospital started sending appointment letters which include a link to CaMKIN, so we have seen an exponential growth in numbers – people didn’t know it existed until Covid. There are just over 200 members now.

The Facebook page bridges the gap between patients and the hospital without the hospital getting overwhelmed with requests for information and it’s a way for me to share resources. So if there is a particular announcement or update from the surgeons or any of the team it is emailed to me and I post it directly to the group and it goes to a lot of patients.

We used to meet in person every few months but we now have weekly Zoom meetings; every Saturday afternoon I put a link on Facebook and we just meet for a Zoom chat. There is no agenda, it is whatever is going on at the time, if someone is having a bad week or doesn’t know what to do with themselves or if they’ve done something interesting or new; or just to see other faces as for lots of people it’s the only contact they have with other people.

The Zoom meetings are quiet, sometimes we get a lot, sometimes it’s just four or five but that’s ok if it helps that four or five; it is open for anyone who wants to use it. We’ve had a quiz night; today we had a session with a dietician from the Royal and it was really good, very informative.

My version of ‘shielded’

It is very difficult for patients to decipher the Government advice and work out what is relevant to them. In the original statement the list of vulnerable people was enormous and then it got smaller. Up to date advice can be found on the Kidney Care UK website which is really useful.

Generally, all kidney patients are shielded and not having any contact with people. Saying that, we have members in the group on stage 4 – the last stage before kidney failure - or on dialysis who are still working at home; some people are in businesses where they cannot work at all; and we have someone who is in stage 4, awaiting a transplant and he is going out to work. The guidance is there but how you interpret it can be very different.

As I am a transplant patient, for the last three months I have not been supposed to see anybody or leave the house for any reason; but for me that is not sustainable. I have been running really early in the mornings or very late at night for an hour or so. I don’t see anyone as where I live is very rural. I know that is not following the guidance to the letter but it works for me.

During Covid it is very important for the most vulnerable people in society to have access to the support they need and that can be quite difficult. They need somewhere to turn to and that’s what our group gives people; even the ones we don’t hear from know they can come to us when they need help.

Even if they come on a call just once a month or chat with just one person – that’s one person they wouldn’t otherwise be able to talk to. Covid has made the world a lot smaller, people are communicating so much more and I think carrying that on in the renal community is really important, especially on a local scale. We’ve got the technology, we have to remember to use it – even after Covid.

Story told: 16 June

@Tarabash18

@GMKINet

Read more stories about digital transformation during COVID-19 >

 

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Original article link: https://www.innovationagencynwc.nhs.uk/news/Online%20network%20keeps%20kidney%20patients%20connected

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