Having been diagnosed with cancer twice in six years, Jonathan Lewis has seen all sides of care. He tells Your Mac News why he’s sharing these experiences as part of a partnership between Macmillan, people affected by cancer and several organisations in Manchester.
‘Six years ago I had throat cancer and 12 months ago I was diagnosed with terminal lung cancer. I’ve received cancer treatment in Manchester and it hasn’t always been the best. For this reason, I got involved with the Macmillan Cancer Improvement Partnership to make a difference, both for myself and others.
‘The partnership is between Macmillan, Manchester City Council and various organisations within the NHS. Crucially, it’s also trying to involve people affected by cancer, whether that’s patients, carers or family members.
'It’s only through listening to people affected by cancer that organisations can learn.'
‘There are good and bad bits to my care. Parts of it work really well, particularly the medical care I receive from consultants and doctors – I can’t fault that at all. Some of the nursing is very good as well. But a lot of it is average at best and too much is sub-standard.
‘Once I needed a blood test the day before chemotherapy but there weren’t enough nurses. This meant I had the blood test on the morning of the chemotherapy and waited two hours for the results. Later, my GP said, “Why didn’t you come here to have it?” The answer, of course, was that I didn't know because no one had told me.
‘Another time, my treatment was delayed because the doctor told me I was having radiotherapy to my back, but the radiologist was talking about my “posterior chest wall”. Anyone with clinical knowledge will know that this is my back – but I didn’t. Communication can't happen properly if people are talking different languages.
‘If services are better coordinated and communication is improved, the patient wins and the NHS wins. The organisations in this partnership are full of good people but they don’t always understand what it’s like to have cancer. They can’t unless someone says, “That’s not the way it works. That’s not what it feels like. Perhaps you could do this.”’
Share your experiences to help others – become a Cancer Voice
Improving cancer care
By 2030, the number of people living with cancer in the UK will double to four million, putting a lot of pressure on services.
Radical change is needed and that’s why Macmillan is working with many health and social care organisations across the UK in partnerships similar to the one in Manchester.
Sadly, Jonathan passed away after being interviewed for this article. His contribution was inspirational and he’s been recognised with a Macmillan award for his outstanding contribution to this programme.