Hi All
i have read a couple of posts this morning and many more in the past that indicate that people are not getting the help and support from NHS services in a timely manner for distressing symptoms.
At the start of our PCa journey , although my husband was symptom free, we experienced delay after delay in getting timely appointments for the various diagnostic tests and the results. So, I know how frustrating and upsetting it is when the NHS simply is not there for us when we need it.
we do, of course, have various channels we can go through - PALS, GP , MP , advocacy services, Healthwatch, CQC ( you can complain directly to the CQC I believe) , letters of complaint to CEO's, media etc etc etc. But - they don’t really seem to get us far.
From our own experience - the activity that worked the best for us was to keep a diary of every contact made with anybody connected with the NHS and the prostate cancer service delivery. For each and every contact I recorded exactly what was said, the name of the person we spoke to and direct telephone contact details. I found a lovely lady in the hospital urology services management office who actually took ownership of our problem. She chased everything up for me and really helped. If you stumble across somebody like this - cherish them! In a service that is not meeting its obligations, these people are few and far between but they do go the extra mile. I learned that we literally had to monitor our own pathway and be politely but firmly assertive and state, ‘on such and such date you promised… and this has not happened, why not? Etc etc
i have come to realise that the NHS focuses very much on science and statistics and very little on the psychology of illness . But this disregard of the psychology seems to extend to a complete ignorance of how much of a burden cancer, its treatment and the physical and mental side of things impacts those who love the patient - spouses, partners, family members etc.
I do hope that everyone here manages to navigate through a complex system to get the help needed for themselves or their loved ones but I am wondering whether there is anything that MacMillan can do for patients who are continually bounced around the system with little attention to or resolution of their problems?
Hello Worriedwife
What a cracking and informative post - that's just what I did. I kept everyone's details telephone numbers, e-mail address and what they did and yes it did come in useful.
I am aware Macmillan are trying to improve the cancer journey for patients but it's not easy. On a personal front off the Community I am involved in a project called "The Lived Experience" where people like me and you who have "been there - got the T Shirt" try and advise folk, through our own journey how to advocate for themselves and to ensure they get the correct and timely treatment.
The big issue is nothing is "joined up". The NHS App only works in England and that's once you have asked for full access to your medical records. Different NHS Trusts use apps such as "My Chart" and "Patient Knows Best". Not every Health Authority offers every treatment (Brachytherapy isn't offered everywhere), The NICE Guidelines to advise people of after/side effects of treatments are ignored and the effects on partners/family etc are never taken into account.
I will say - this Community fills many of the gaps left by the NHS and the support all of the Community members bring with their collective knowledge from thrir personal journey is immense - so thank you again to everyone who contributes even one post. It all helps.
If only everything was perfect.
Thank you for bring this up - it's something we all have to deal with and as you say, the mental and physical stress of a cancer journey impacts us all.
Kind Regards - Brian.
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