This has been a terrible ordeal for all of you and as my husband has stage 4 incurable cancer I hope we get better care.  I am aware of others going through the same pain and lack of care and when you are struggling with this and a dying parent the strength to fight is lacking.  This is not our fault but it seems that treatment is given then you are left to cope.  Perhaps when things are sorted you could contact PALS, put everything in writing and a lesson may be learned so others are supported a little better.  My warmest wishes to you and your family, don't feel guilty about being relieved, it's human nature to not want your loved ones to suffer.  Carol 

Hi,

So sorry to hear about your horrible experience and the loss of your father. Even when everything goes as it should it is bad enough, I can only imagine what you and your Dad went through.

Nothing you do can turn the clock back, but you might be able to save someone else going through the same. 

Your complaint may be complicated as so many services are involved from different NHS bodies.  There’s a good guide to making a complaint at www.nhs.uk/.../

Citizens Advice are pretty good too. The services are all commissioned by the local CCG who are responsible for making sure they are all coordinated - something many GPs lead on. 

In the past I’ve had cause to complain about my son’s care (not cancer related) and our MP and local councillor were useful (councils are involved in overseeing the NHS locally).

Good luck

Dave

Dave, you are so right, complaints are necessary or those involved will carry on treating us as if we're not worth bothering with.  It's so sad to see the lack of care that lots of patients on this forum are not getting.   The problem is that fighting cancer is hard enough without fighting the authorities as well.  You have to be strong to use energy on those not doing their job properly.   Take care,  Carol 

Hear, hear. Well said Carol and Dave. 

That's heartbraking ... can't believe you had to go through that alone .. someone , the G PS especially should hang their heads in shame ... I'd hopped no one would have to go through that now ... my heart goes out to you ... and I know exactly what you mean, you didn't want him to go .. just couldn't bare seeing your dad suffer like that .. you did amazing .. thankfully he had you to hold his hand .. but if your strong enough , take that advice and anything you do may help someone else to not go through what you and your dad have ..

Sending you a big hug ... Chrissie 

Thank you, Carol. I am so sorry to hear you’re fighting the battle against this awful disease with your husband and I hope that he stays comfortable for as long as possible. I think if my fathers cancer had not spread to his brain he would have had many a word to say to his GP! He passed away yesterday with his GP still denying there was anything wrong with him, I’ll certainly be taking that up with them. Take care, CA

Thank you, Dave - really useful. I used to work in the NHS but even then, other than PALS there’s not really any open conversation about when things go wrong or how to treat their customers, because that’s what we are, with dignity, openness and with the service we ultimately pay for. My dad was doing them a favour by dying quickly and not burdening them with a lengthy care bill! Cynical I know.. I’m sorry you’ve had trouble with your sons care, it must be difficult.

Me too. Ironically, one of the roles in my old job was on a committee of managers and patient reps that independently reviewed complaints (how our Trust had responded and what might have been done better). I had a similar role after I retired and became a patient governor at a cancer centre. 

Almost invariably things went wrong because of poor communications, especially when care was transferred from one care setting and team to another or because people wrongly assumed that everything was OK because no-one had complained.