Ruth Taylor explains why she believes involving patients in the change process is so important
I was diagnosed with breast cancer at the age of 33 in February 2015. I had a year off work while I had treatment; chemotherapy, a mastectomy, radiotherapy and Herceptin. And while I know that the clinical care I received was excellent, there were certainly aspects of my experience as a cancer patient that could have been improved.
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Patient Stories Series This week on Click on Wales we are running a series of patient posts in relation to our new crowdfunding campaign for our Helping Patients Change the NHS project. |
I think it’s important to understand that after a diagnosis of cancer, many people can feel a total lack of control. I had no control over getting ill and I had no control over the treatment that I needed to have. The last thing I wanted was endless hospital appointments and medicine that made me feel ill, when I felt perfectly healthy. That’s just one of the reasons it’s so important to involve patients in decisions that affect their own lives and treatment – to give people back some sense of control.
One of the biggest complaints I’ve heard while talking to other people having treatment – and experienced myself – is that patients feel that doctors don’t look at them as people, but as a disease.
A factor that could contribute to this is the impression that their time isn’t valued. I barely went to an appointment that wasn’t delayed – the most I was delayed was more than two hours, which, when you’re already feeling anxious, can be torturous. And when you’re seriously ill, every second is precious; especially when that time could be spent with people you love.
Letting people know when their appointments are delayed is not only just good manners, but can make a real difference to reducing anxiety in patients like me who spend their whole day worrying about an appointment.
Making medical information easily available for both patients and medical professionals seems like common sense, but is frustratingly difficult in practice. At a superficial level, it’s annoying – I had to update my address with four different departments of the NHS – but more importantly, if someone is admitted to hospital or wants to find out more about their own condition, life becomes quite difficult.
Everyone understands that initiating change in an organisation as big as the Welsh NHS isn’t easy, or something that will happen overnight. But I’m proud to work for Tenovus Cancer Care, an organisation that believes that involving patients in the change process is the best way to ensure that any changes that are made are done with the people it will affect the most – patients – at the heart of it. And that’s why the ‘Helping Patients Change the NHS’ campaign is so important.
I can empathise with this. I realise that one’s health is ‘the most important thing’ in most people’s life, but people with busy ‘working’ lives find it difficult and irritating to suddenly adopt the role of a passive obedient patient subject to the (sometimes) Kafka-esque whims and regimes of the NHS. Patients can be ‘talked down to’, as ‘children’ or worse as ‘mentally deficient’ – mainly if they are older or in some way disabled. Although to be fair, steps have been and are being taken to improve this, the pressure on this ‘service’ aspect must be kept up.