How to go about a private GP appointment.

[Alphabet1spaghetti2]

Would be grateful for any advice as I think my brain has glitched.

How do I go about booking a private GP face to face appointment ? It is for suspected stomach cancer. Is bupa better than Nuffield, do I need to find one that specialises in Gastric or pain relief? Or are they generalists? Google is giving me the impression that I need to book a face to face at a private hospital as opposed to a clinic based GP.

Dh has seen his Nhs GP and has been referred on the two week pathway, but is in pain and needs to know what he is facing. Nhs GP has refused pain relief other than paracetamol and has refused a sick note for his work. Apparently they are two separate issues and need two more appointments - the next available appointment is a month away. He only managed to get an emergency appointment after 2 weeks of daily phoning. Dh was prescribed antacids. He had been referred for blood tests, (2 weeks for results) stool tests (2 weeks for results) and endoscopy. Our local A and E has some of the worst wait times (18+ hours) and understandably Dh would rather be in pain at home rather than on the floor of an and e. The hospital wait for scans which are around 26 weeks.

What a nightmare, I suspect the gp has to prescribe new anti acids, maybe the pharmacy wouldn't take instructions from a hospital. Was he given any medication and a Letter to go home with. Why does the dn say he's allergic, that's also something the hospital should have been aware of before prescribing it.

@TraitorsGate the medication was issued by the hospital - but they hadn’t given it to him previously nor had he been prescribed it previously in his life. Brand new never before taken medication. No one knew he was allergic. After taking it at home, he broke out in full body hives and his breathing worsened. I stopped the medication because it was the only he was taken that had these possible side effects and the only new one he was taking. Side effects then disappeared within hours. District nurse agreed that it was the lanzaprazole he was allergic to. District nurse said to inform gp and ask for a dispensable alternative. Which I did. The gp asked the gp in house pharmacy to deal with it. They phoned me (see previous post) and decided to re read the bloody notes correctly.
just had a phone call from in house pharmacist to say that have now prescribed an alternative dispensable anti acid.

I hate to say this but it took a good 3 weeks to get the palliative team on board and that was an urgent end of life referral. The MDT's take forever to pull together...

If you do look for private care, make sure that they are fully experienced in end of life cancer care - I worked for a home care company and there was a huge variation in the skills of the staff. Some I refused to work with full stop. The care company that my Dad had were little worse than useless and certainly not trained to any high standard. I used to just send them packing most of the time as it just stressed Dad out.

@LizzieBennett73 this is my worry. Dh employer sent some colleagues over today to deliver some furniture and just say hello. He was deeply unhappy - even though he had asked for this only yesterday. He’s also refusing to speak to a couple of his dearest friends - even to just let them know.

yes the mdt time aren’t even letting us know for two to three weeks. Then there will still be await for things to slot into place. As much as it is a negative thing to say, I don’t think Dh actually has that much time left. He’s deteriorating daily. I would love to think he has more time, and some treatment would buy him even longer. He seems very accepting of it.

My Dad completely pulled into himself, and refused to see anyone other than my sister, my daughters and I. He got really stressed when other family tried to visit. It's very normal. Go with it. He needs you to be the gatekeeper on this. Just make excuses and say he's asleep or too tired.

I'd thoroughly recommend getting some books from Dr Kathryn Mannix. They really helped me understand the process of dying and gave me immense reassurance. https://www.kathrynmannix.com/ it helps when you can interpret the signs.

This lady is also very good to watch https://www.youtube.com/@hospicenursejulie

You could ask for social care support, say you’re at breaking point and you need help. This is not a criticism of you, you have done so much and so well navigating all this. You could also see if there is a hospital discharge team associated with the hospital he was in if they offer care to support people when discharged. If there is call or email them if you can say it’s an unsafe discharge and ask for help. There should be more support for you and you shouldn’t need to fight for it x if you want to DM I would be happy to help compose emails or call for you.

@Alphabet1spaghetti2 I'm horrified at the lack of joined up care. Your GP surgery should be visiting you and your husband and speaking to the hospital. I was a GP for 32 years and getting palliative care right is so important.
I'm in Scotland but we can prescribe all the drugs and refer to the hospice. It just seems crazy nothing is happening.

Just before Christmas 22 I had a patient diagnosed with a terminal illness. He presented to me on the Monday and on the Friday once we knew the situation I spent 2 hours sorting all of this out...drugs, district nurse, Marie curie, notes for the out of hours service. The district nurses were fabulous as they got social care involved for help with the personal care . It went so smoothly.

You must try and get a GP to push this forward. Or phone the specialist nurse at the hospital...there will be one. Of course they may well phone you sooner than 2-3 weeks...I hope so.

But of course you must be mentally exhausted and be lacking in any mental reserves to cope with fighting that's why maybe the District nurse could speak for you.

My own husband died aged 50 from a brain tumour. Prolonged illness over 12 years but the final deterioration was quick. He died at home too. It's so horrible for you. I do understand some of what you're going through.

The medical profession only gets one chance of giving palliative care to someone and it needs to be done right and with compassion and empathy...try and put themselves in your shoes.

Sending strength from my end.

My family member started to withdraw and only wanted close family to visit, it was tiring and not how they wanted to be remembered. I'm sorry to hear he is deteriorating, does he want any further treatment or to go back to hospital. It really sounds like there's no joining up of services where you are, you'd hope the gp and macmillan team would be more involved now he's home and not under the hospitals care. I hope being on here does help and give you some support. Can MacMillan advise you at all.

Oh Alphabet - what a nightmare. My heart goes out to you both

I've thought about this and typed out various suggestions but do you know what - go to the top. Tomorrow contact the hospital and ask for the chief exec, if not available the chief nurse.

Explain your DH had an unsafe discharge (this is where a patient is discharged without necessary care package in place), you know he has been discussed at the MDT but have been told this could take 3 weeks to get back to you and the GP - and I'm sorry to say, I'm not sure your dear DH has 3 weeks. Tell them you want to know 3 things by close of play
what the MDT discussed
what they have decided to refer him for
when this will start.

If they can't / won't - tell them your DH will be returning to hospital and as he had an unsafe discharge he will need to be re-admitted until those services are in place. The hospital gets fined for unsafe discharges returning to hospital and the head honchos will not like it.

I'm so sorry you find yourself in this situation - sending strength.

My heart also goes out to you. I can't really add much specific advice but I work in investing so might be able to help with pensions stuff. But you sound like you're being superhuman juggling all those issues while being there for your husband.

My friend was with her dad in his final few weeks of cancer. She said their world shrivelled to just their little family unit and in many ways it was a time she treasures, albeit under horrendously sad circumstances.

I'm so sorry for you, every day must feel hellish without the appropriate medication and care package to support you.

Yup - I hear this - I recognise it all. Complaining is for the purpose of getting him adequate pain relief which is the top priority - it may be the only way of getting that pain relief.

Consultants secretary rang. We are to turn up early and not be late for the consultant next Thursday morning. A nurse will be present apparently.

I have gone into our gp surgery and made a bit of a scene. A gp is coming out sometime today, as a house visit. I’ve asked for continuous patch pain relief such as fentanyl at the very least. They have agreed to consider it.

The gp doesn't need the hospital permission to prescribe medication so there's no reason that they can't get some painkillers for you, there are different sorts of patches, we used butran. He may also need anti sickness medication and something for breakthrough like the oramorph or buccal.. . With the meeting next week, you can only go if your dh feels well enough so make that very clear.

Make sure you have a back up plan if your DH is too I’ll to attend…..I’m nhs and we use ‘attend anywhere’ for video calls …..ask the secretary for a ‘just in case’ link

Good luck today, the gp can sit down with you both and discuss what your dh wants to do, does he want to stay at home, what help does he need, would he want to go to hospital again, have any more tests, what do you both understand etc. they can also speak with the hospital doctor, they should all be working together.

Update.

GP has been. Agreed for additional slow release morphine patches and lactulose (on top of what’s already prescribed due to bowel impaction) and a ventolin inhaler for his lungs. She let slip that the cancer has spread to his lungs, probably via secondary/tertiary bone cancer which would explain his back and shoulder pain. (Not in our discharge notes, I did wonder but still a shock to hear - she thought we knew.) She has also agreed to contact the local hospice for at home palliative care. Dh wants to be at home whatever happens next. I will support that.

I'm so sorry this is happening to you and your husband.

Not sure if pp have mentioned CHC? Sounds like your husband would be eligible for this to help with car. Please ask the GP/DN/ palliative care team about this.
Do you have a specialist nurse at the hospital you can call?
A Macmillan information centre at the hospital?

That's good that the gp has been and is arranging pain patches and home care, between them they can arrange any help you need, extra medication, any equipment that helps him feel comfortable. Don't feel pressurised on going to the hospital appointment. Concentrate on yourselves and cherish the special times.

Honestly once the hospice got involved everything became much easier, they had access to drugs and knew what to do. Have they arranged for a break for you ? This is hard to do all alone x

@notapizzaeater no nothing has been arranged. Just the gp agreed to write to the hospice.

How are you *@Alphabet1spaghetti2

Dh tried the fentanyl. It didn’t agree with him. So back to morphine and paracetamol. He Has passed d the district nurse visit for pressure sores with flying colours she was very surprised to see it has nearly healed. Dh is very tired and all over achy, but the new chair with vibration seat seems to help. He even managed to sit in the catio in the sun whilst I tidied up. We went for Brock and he managed a shower.

I am all over the place emotionally. Currently I am not tearful, I just seem a little numb and exceedingly tired. Dh wondered why I was asleep for an hour next to him this afternoon, as I am not suffering like him…… had written confirmation of his consultants appointment - turns out it is at a totally different hospital and we must turn up at least an hour prior to our appointment so that’s going to be fun in the city rush hour.

you are doing so brilliantly, caring for and advocating for your dear husband, no wonder you are so tired, lying next to him seems a good way to keep close and support each other. I am so shocked at what you both have had to put up with so far on this terrible medical journey. I am sure you have, but just checking you have contacted macmillan directly for support - I know they have a support helpline and buddy network, which might help you if you do not have many people around to talk to about this. Thinking of you, so admiring of how you have been dealing with this. Wishing you continuing strength x

Sending you both strength, I don't understand why you need to be at the hospital so early, are they expecting your dh to sit around on their hard chair for at least an hour waiting fir them to start.

@MissMoneyFairy my guess is due to parking - it’s a big city hospital with car parks a long way from the main hospital, so if you need to drop someone off, park and get back to them or find a wheelchair - it takes a lot of time. Or my other theory is that they book several people in for the same time slot, eg at ten am they have booked ten people in, the same at the next time slot 11am. If there are no shows, then you get seen quicker, if t everyone turns up, you get seen later, perhaps they do it in alphabetical order or first in first seen for each slot.
whatever, it will still mean we have to be leaving around 7:30- 8am for a 10:30 slot, as it’s city rush hour traffic on top.