To expect the GP to get in touch following a terminal cancer diagnosis and hospital stay for my elderly dad!

[Totallybannanas]

We have not had any contact from the GP. I tried calling yesterday to request an update and to ask if the GP could call my dad—ideally to carry out a well-being check and potentially involve the district nursing team. I also need the GP to review and renew a prescription for an out-of-date cream, which the carers need to apply. Additionally, a Do Not Resuscitate (DNR) form still needs to be completed, which I’m surprised wasn’t done while he was in hospital.

When I spoke to the receptionist, I was told there were no available appointments and advised to call back at 8 AM the following day. I tried again but couldn’t get through. I’ve had to push hard with the hospital just to get the discharge reablement team involved so someone can check in on him, as he lives alone and I also have work commitments.

His mental health has deteriorated significantly—he seems like a completely different person. He was once a fit and active 80-year-old, but now he is frail and mentally broken. I’m simply asking for more support and involvement from the medic
al team. He is still mobile and independent, but he has lost confidence. He still has pain due having a oesophagus stent out in, but refusing pain relief. I'm not trained for all this.

I don't know much about the NHS system these days as my dad died 15 years ago but what I do remember - Marie Curie sent a nurse to my parents two nights a week, it was a godsend to my mum. And that there are companies online that do delivery of things like bandages and dressings, stuff like that drink the PP mentioned - it's really useful because that seems to be the stuff that really gets forgotten. I would also say, the worst of the admin comes whenever the person moves between home and hospital, because you have to start at zero with getting the care package in place and all that. So if you can, if he ends up back in and out of hospital, see if you can't get someone in the hospital to help you get a care package in place before he leaves, or at least get a couple of weeks of supplies of his medicines (especially pain relief). I'm really sorry for what you're going through.

Ive only scanned the thread, so you may have mentioned it...

Is there a documented permission from your dad, or an LPA or similar? Confidentiality and consent issues can make it really difficult to look after somebody elses healthcare for them unless they have given specific consent for you to be involved. Being next of kin doesn't automatically give you permission.

The DNAR may have been done in hospital (also may not) but a separate community DNAR is often required (i have no idea why).

Sorry about your Dad and the difficulties you are facing. I would have expected the hospital would have sorted out this prior to discharge. Surely the Oncology team should have referred him to Palliative Care who would be liaising with District Nurses. The DNACPR form should have been given on discharge to keep at home and information passed to the GP. Medication information would also be passed to the GP who would be the last part.

Get back in touch with the Oncology Team, don't bother with the discharging ward as in my experience once someone has been discharged they are no help whatsoever.

Also contact Marie Curie and/or Macmillan for advice.

My late OH was a GP and if a diagnosis like this had come through from the hospital he would have been making contact with the patient and family to set up the necessary medical support. That sort of care has gone down the pan now. It is disgraceful and inhuman. It makes me sad.
I faced a battle during his terminal illness. My whole life was taken up with banging my head against a brick wall with all the so-called services.

My parents died 25ish years ago, their GP used to call in when he was passing just to make sure everything was okay! Imagine that now, a GP even being able to recognise their patients - pretty sure non of the GP’s at our practice would be able to pick any of our family out in a crowd. Things have gone downhill in a big way sadly. A family DR used to be such an asset to the whole community they worked in.

I have got a carer coming in during the morning which I had to fight for, but he is independent just needs supervision. However, he just wants his family and feels anyone else is an intrusion. His sister has a chest infection, my brother is working and can't take any time off and I have 2 weeks sick leave. He isn't even dying yet, but he feeling sorry for himself and not looking after himself. I've just left to come home, and he's asked me what has he got for lunch. I've left him soups and eggs and a few bits. But I can't be with all the time, and do his shopping and also have time for me to rest and reset. I am not even getting any sleep, as his bright is blasting music from 10 am until 5 am every morning. I'm ringing the housing to complain, I've rang his cancer nurse to help with pain and I need to ring for meals on wheels and GP, it's just endless and everything is a battle. I have rang Macmillan and they are calling back. I know he needs to go out today for his mental health but I've had to come to shower, eat and sleep.

Basically he wants me to be his 24 hour carer and I can't do that. He needs to help himself but I also need help myself.

my DM had an accident and it took three visits to A&E to diagnose a broken back. Once diagnosed I was surprised the GP didn’t make contact and I hadn’t a clue how or when to assist her to mobilise etc. so I found an email address for the actual surgery and sent it c/o her GP. Admit I was a bit PA expressing surprise that no one had been in touch given she’s in her 80’s and had not once had an illness requiring a GP apt. In the past. By the end of the day the GO had referred to an elderly person coordinator and she and OT visited within 24 hours.

When I was a baby and unwell my Dad stopped the GP in the village to ask if he could call in to see me which he did. However that was 57 years ago and as the population of the UK has increased by 20 million people you can understand why things in the NHS have had to change over the years

I'm so sorry you're going through this, but honestly, a lot of the things you've written about are not the GP's job. The care situation isnt something they can impact. You're right that a DNAR should have been done in hospital, so should a district nurse referral if he was likely to need ongoing input for dressings. A GP can pick these things up, yes, but the days of regular review for discharged patients are long gone. There is no capacity for it. The main thing they can help with is the pain control and I'd emphasise this with the GP surgery. Can he leave the house? If not, call and ask for a home visit because he's been diagnosed with cancer and isn't coping with the pain. Focus on one thing that the gp can actually action and you'll get further.

I’m so sorry you and your Dad are having to deal with this. It’s very difficult.

Sorry if someone else has already mentioned this but does your Dad have any money available to spend on getting help? Does he own his own house? Can you or other members of the family lend him money on the understanding it will be taken from your father’s estate? I think it’s understandable when people don’t want to spend money on care that should be provided by the state but often it’s best to try and sort out things yourself. Do you have POA for health and finances?

Social Services for an emergency care assessment

District nurses for hospice at home care

Any healthcare professional can work through a respect form for your Dad. It should then be put on his medical file with the GP and his home care notes

https://www.resus.org.uk/respect/respect-healthcare-professionals

And yes it is crap. He shouldn’t have been discharged without a care plan in place and as much as he won’t want to he will have to get past wanting only family care. My parents were the same and the emotional blackmail is grim

When and at what point do I involve the district nurses? Who should be monitoring his progress at home? How often should we be having scans or meetings with his consultant? I don't know what the next steps are and who should be monitoring it.

all this should have been covered with his consultant before he was discharged. I would call the consultant and ask - or ask PALS to intervene if you think it’s an unsafe discharge

With this information, I wonder if your dad was offered support but declined it "my daughter will do it all". If he is mobile and can wash/dress himself then it would not appear that he would need a carer, though.

I see this happening surprisingly often as someone who works on the wards.

if you can't do what your dad is asking, then unfortunately you need to be honest with him about what you can do - for example I can take you to the supermarket once a week for shopping, but I can't come round every day to prepare meals for you, although you can come over to us for Friday evening dinner/Sunday lunch.

However, it's a reasonable expectation that he should have been referred to palliative care in the community. If you have a cancer nurse contact, then I'd start there.

If he has only just been given the diagnosis of inoperable cancer, then he may not have been ready to have the DNACPR conversation - it's best to try postpone that for at least a little while after giving the bad news,unless he clearly only had a very short time to live.

For the GP appointment, I would say that his pain is not well controlled - that's an appropriate symptom and not a lie from what you said.

If I'm not there he isn't cooking or eating the appropriate things, he has to have a soft /pureed diet. I have ordered some meals to try but I know he doesn't like purees stuff. Medication he says he can do himself, but since staying it's evident he is managing the medication at all. The care side is mainly to supervise him so I can get respite. At night he is has been sick he's worried about choking, we have a piper alarm. I just dot. Think he is able to look after himself. Nutrition is a massive thing, as he lost weight and he may have radiotherapy. DNR he has already said he doesn't want to be resuscitated. His cancer growth is growing behind his aorta valve so I'm worried this may cause heart issues obviously I don't know.

Sorry you’re going through this. My dad currently has non curable cancer. I have to say, the gp isn’t particularly involved as the cancer support workers and specialist nurses are my dad’s main contact. Even 111 isn’t who he needs to call -he has a different number. Does your dad have those numbers ask they are the ones with access to refer for mh support etc.

Have MacMillan been in touch? They are usually a great help for chasing things up and helping you get the support you need.

Macmillan can only offer emotional support. I have contact numbers for cancer nurse 9-5pm normally have to leave a message and acute oncology which is 24 hours and based at the hospital. Those are the numbers I have.

Apparently a doctor rang today, but not sure which doctor or why.

Ah, perhaps things have changed since my friend died 6 years ago. They helped her with allsorts.

On the NHS app there is a ‘Message’ option (bottom right) you can send a message directly to your GP from there

Hi, dad only had his upper gastric cancer nurse. She works 9-5pm. I'm not sure if there is anyone else.

@Totallybannanas my dad has a 24 hour number to call. I know because he had a high temp yesterday so mum called it. It was that rather than 111 and she got a call back from the specialist nurse. You may find he does have other numbers but also the multi disciplinary team will be discussing his care and the gp will get reports but not same day.

our experience isn’t perfect at all and having 2 types of cancer sucks because his “specialist” nurse is only specialist in one of the types so can’t advise on the other. If you want the gp - be clear what you need from them and make an appointment in the usual way. If you have no luck then email the practice manager. Hope you get the support you need.

You'd hope to feel like someone cares and that some one might check in with you who knows a bit more about what's going to happen/or what's needed than you do. But this doesn't exist I'm afraid. Our experience was that you get the absolute minimum if you battle through the processes . Not blaming individuals at all ,its really sad.