My partner was diagnosed last Spring 2018 with Prostate Cancer which had already spread to his bones. After the diagnosis and the various tests and scans etc he began a course of Chemo in Sept 18 - through to Jan 19. He coped really well , had hardly any side effects ( apart from fatigue ) and went back to work on a phased return and light duties in November. He saw his Consultant in November - roughly half way through his treatment. His Consultant ordered scans ( Bone and Thoracic / Pelvis ) just before Christmas. He did not get the results nor did his GP ? After many phone calls in January he spoke to a member of staff who looked up his details and said there was only one scan result. The one carried out on Christmas Eve was not there. She promised to pass on his concerns and explained he should have been sent an appointment to see his Consultant at the end of his Chemo - which had ended on Jan 15th.
Nothing further was heard and his GP emailed the Consultant - the reply to the GP and my partner was that he had failed to attend his appointment in January ( an appointment we knew nothing about and clearly the member of staff he spoke to knew nothing about either. If letters came in the past they came in duplicate on the same day. The member of staff he spoke too suggested he had slipped through the net !
He was offered another appointment in April ( too long to wait as he was going rapidly downhill and in a lot of discomfort with back pain - radiating down his legs. Appointment was brought forward to March. When he saw his Consultant all above was brushed to one side as he wanted new scans which took place two weeks ago and a week ago ( different hospitals) The Consultant said he would ring him as soon as the results were through but yet again nothing. Many calls this week and there is no one there to answer the Consultants phone or his P.A.'s phone. My partner is getting worse by the day and is at the end of his tether with pain and no sleep. He is on Paracetamol / Ibrupofen / and Codeine. His GP said he should wait for the results to see what the next treatment may be but surely he shouldn't be waiting weeks and weeks. Why can he not have a pain management plan in the meantime ? If anyone here has experienced this or could give advice I would be grateful. I feel it is getting to the point of taking him to A&E - then hopefully they can give him a stronger pain medication. He is going upstairs on all fours and could not get out of bed until lunch time today as the pain was so bad. He does not want to make a fuss but I am getting desperate on his behalf. He is very emotional and weepy.
Sorry you are going threw this with everything else have you tried ringing your specialist nurse my husband had prostate out 3 weeks ago since then no one has been in touch with past treatment with nhs you have to keep banging at them ring everyday if you have to good luck and I hope you get your answers
Hi
That sounds a complete nightmare. I am so sorry you and your partner have all this to contend with. None of this is a ok
I think your best course of action would be to contact the hospital’s PALS (patient advice and liaison) department and make a complaint. You can find the contacts on the hospital’s website either under PALS or how to make a complaint. Write down an account of the facts and dates in as short a form as possible - I’d suggest bullet point dates - and include appointments that should have happened but didn’t.
You could also call the Macmillan helpline to talk to the nurses there. They will advise you on how to get the help you need with pain management.
Good luck!
Hi - thank you for your reply but he does not have a Specialist Nurse ? Is this normal practice to be assign a Nurse ? He has been ringing everyday but never anyone there to take calls ? Receptionist said the Consultant is in meetings / at another hospital / seeing patients etc. If only they had an answering service on the Consultants extension line - he could leave a message to ask for a call back ?
Thank you again for your reply - hope your situation improves and your husband receives the after care he needs too - all best wihes to you both.
Hi - thank you for your response to my first post. I have the number now for the Macmillan Nurses and will ask him to ring for advice about a Pain management plan. I will try to persuade him to look at the PALS option too but I think he will resist this as he does not want to make a fuss. He has never had any medical issues in his whole life until now and being diagnosed has knocked him for six ! He has no idea about doctors / hospitals / NHS or how to cope with the struggle to be heard and listened to with regard to his situation. Thanks again for your response and I will post again if we make headway !
Hi
Good luck! It’s not really about making a fuss. It’s about getting your medical situation sorted. The PALS people should be able to help you complain in a non confrontational way - at least that’s what they are supposed to do.
Xx
Hello
Yes I agree totally - if it had been my call I would have complained long before now. I have to keep reminding myself - its not my illness. He feels he has so little control over what has happened I was trying to be sensitive and allow him to take the lead.
Have made some progress over last 24 hours as he is ringing the Macmillan Nurse help line today. He will listen to them and then we can hopefully move forward and see what happens next ? Thank you for your reply.
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