Carol shares her experience of taking part in LEAP at Dementia UK and a leap of faith travelling to London alone

Hi. This is my diary regarding a trip I had on 4th December, to London for a meeting of the LEAP group. LEAP stands for Lived Experience Advisory Panel which Rachel Niblock had asked me to join.

So…I travelled to London by train from Canterbury West to St Pancras London. I have been on this journey several times now but always accompanied by others. On this occasion I was travelling alone. Yes….alone. Needless to say I was extremely nervous but also quite excited at the thought of pushing my comfort zone a little.

On arrival at St Pancras I was met at the ticket barrier by Rachel as planned, and also Tracy. We then made our way by underground to Holloway Road followed by a short casual walk to Dementia UK building. The trip up went so well with no mishaps or difficulties, I’m not really sure what I was so worried about.

On arrival we had a nice cuppa and biscuit which was a delight and warmed us up ready to start.
We had the usual introductions followed by a small exercise to make us feel at ease and relaxed. First on the agenda was Admiral Nurses. We had an introduction to the lovely Hilda Hayo, admiral nurse, and a very in-depth intro on the work these nurses and support staff do for people living with dementia and their carers. I learnt about the clinics they run for face to face discussions, the helpline which is charity funded, and the three tier staffing system in use. These nurses are angels ready to help and advise people who need it.

Lunch was a selection of sandwiches, fresh fruit, biscuits, salad and drinks. Fruit juices and cake. Very nice and satisfying. Following lunch we split into small groups and discussed the Dementia UK website. We advised on how the site could be improved to make it easier to understand and navigate for people with dementia. We discussed about the print and font colour and size. Gave advise on how to re-arrange the menu’s. Discussed that perhaps the site could be split into Carers and PWD area’s to narrow the menu down.

The meeting came to a close with final words from the chair and co chair persons.

Rachel kindly escorted myself and others back to our train stations and actually walked me to my carriage where she kindly arranged for a young lad to give up his seat for me. Much needed by then and very welcome.

I would like to thank Rachel for all her fantastic help on the day. I definitely could not have done this trip without her support. I had a fantastic day thanks to you Rachel.