"Because I’m alone and independent, I’m left to it."

About: Douglas Macmillan Hospice Royal Stoke University Hospital The Christie

(as the patient),

I was diagnosed with terminal cancer 5 years ago and should say that I have suffered from more stress through the lack of care and compassion from the medical profession than from the cancer.

I was under treatment at the University Hospital of North Staffordshire when I was told about the cancer I was on my own as I had no family near me. No one called me afterwards to see how I was, whether I needed any help or support nor did anyone come to see me. Although it was a shock I was determined to carry on living in the way I had.

Because the cancer I have is rare I did some research and spoke to someone from the NET Patient Foundation who recommended that I contact a specialist in this particular cancer at Christies Hospital in Manchester. Co-incidentally I had already contacted Christies and was subsequently seen by their consultant. Sometime after receiving treatment from his clinic I was then offered monthly injections, however I had severe side effects from the very first one and returned to the clinic to let them know. Although I was not seen by the consultant on this occasion one of his doctors did speak to him for advice and I was informed I would not be given this treatment again due to the extreme reaction. I was then sent home and have not heard from them since – this was a couple of years ago.

Up until April 2014 I was visited by palliative care nurses from the Douglas Macmillan Hospice but have not heard from the hospice since then. On that last visit the nurse asked: How long have we been coming to see you now? It’s been quite a while. It made me feel that I’d been hanging on too long, that I should not be here. I didn’t say anything and as she was leaving she said she would call me the following week to make an appointment for the following month. I have not heard from the hospice since then – no calls or visits. I have a dog and take him out for a walk every day, their view was that if I could take the dog for a walk I did not need the nurses.

I feel that if I had been a weaker, more demanding person or had family around me I would have got more help but because I’m alone and independent I’m left to it.

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Response from Sue Mahjoob, Patient and Public Involvement Manager, Christie Trust

We are sorry to hear that you have felt alone and uncared for following treatment. It is difficult enough to have a diagnosis of cancer without feeling unsupported as well. Without further information we are unable to provide specific advice but if you would like to contact The Christie PALS on 0161 446 8217, we can investigate further and see what can be organised.

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Update posted by Keen389 (the patient)

It is now some two weeks since I shared my story on Patient Opinion and I still feel totally isolated and abandoned. I have had no visit since April 2014 and have not heard from any of the services.

Response from Sue Mahjoob, Patient and Public Involvement Manager, Christie Trust

I am sorry that you feel so isolated and abandoned. Please contact The Christie PALS on 0161 446 8217 and we will see if we can help.

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