Guest Blog –Carol Munt

Travelled to Oxford today for the Thames Valley Mental Health, Dementia and Neurological Conditions Network Development Day.

There were some very good speakers from the voluntary sector in addition to those from the Health sector including Professor Alistair Burns, National Clinical Director.

I’m not sure how I feel about the objectives, I have an uncanny feeling that we’ve heard it all before under another guise.

“To share and discuss the local challenges and opportunities”. Does that ring a bell with anyone?

“To recognise the patient voice and hear the priorities of the third sector.” Yes, I understand the third sector priorities. However, being the only patient representative in an audience of some 80 or so professionals I guess I’m a bit sceptical about the patient voice bit. Mind you, being the odd one out I guess they all recognised my voice!!

There is so much lip service paid to patient voice, patient participation, patient group, patient involvement or whatever you want to call it but the fact is that so far patient influence is pretty much in its infancy and we really need to nuture it.

The biggest hurdle to overcome is that most GPs, Consultants and their staff don’t consider that we have a brain let alone a voice. It’s a massive culture change for them to take on board that we ask questions and want answers.

Without doubt the NHS needs to talk to us and to hear what we have to say and we should both benefit from the exchange. There are some excellent examples of how services have been improved as a result of patient pressure groups. Voluntary sector organisations have, by and large, been started by members of the public or patients who wanted to make a change. Look at the research that has been carried out by this sector.

Chill4us is a great example of can be achieved. The considerable interest and active use of the site shows how much this initiative is fulfilling a obvious need that wasn’t addressed before.

Norman McNamara was diagnosed with dementia when he was 50 and is a shining example of a patient who started campaigning on his computer at home and is now known internationally

Look at the Torbay Dementia initiative that started when Norm launched Dementia Awareness Day a few years ago.

As Norm says “Stand up and speak out”,

Another success story is the Forget-Me-Not Scheme launched at Thameside Hospital developed with the help of Linda Wells, the wife of patient Gordon Wells who was diagnosed with frontal lobe dementia five years ago after suffering a stroke.

Linda, 61, of Glossop, said at the time: “I want to make sure Tameside Hospital is a centre of excellence for dementia. Although this is an acute hospital, the dementia is not being ignored and the patients are being nursed in a special way.”

The hospital view was “Mrs Wells’ intervention has been extremely beneficial as we wanted to have a relative and somebody who has lived through dealing with dementia look at everything we are doing.”

I guess that sums up the contribution we can make. There is nothing like firsthand experience of living with a condition or of caring for someone.

I am a qualified nurse but that only went part of the way in preparing me to care for my Mum 24 hours a day, 7 days a week.

The caring wasn’t nursing care, no dressings or procedures. It was being there, making her comfortable. Preparing breakfast, lunch and dinner and encouraging her to eat and drink. Keeping her safe and ensuring she wasn’t lonely.

I could go on but I’d be preaching to the converted wouldn’t I.

Whatever experience we have to share, however basic it might seem, it could make a huge difference to the way patients are treated or services are commissioned so stand up and speak out and remember you’re not on your own either.