does being palliative mean you no longer count ??

[Blacklabmum]

Hi all, I am just putting this out there to see what people’s opinions are of a recent request I made for a GP to visit. My husband is end stage CBD and familial FTD. I choose to care for him at home, he needs all care but is still aware of me and still watches TV. Last week he was very drowsy and we noticed he was leaning to the right with the right side of his mouth drooping slightly. He has alien limb syndrome on the left so usually leans to the left.

I called the surgery to request a visit as He has a respect form which states he doesn’t go into hospital. Bearing in mind he hasn’t been seen by his GP for 5-6 months. I received a phone call from a GP who told me it was no point visiting as they wouldn’t do anything anyway, no one came out not even for a welfare visit.

please let me know your thoughts and what you would do. I was devastated that my lovely husbands life means so little now, when did he become a non person with no rights??

[Millidog]

Hello Blacklabmum, I am sorry to read the experience you have just had with your GP. Is this your named GP or just a GP from the surgery? It is my understanding that in such cases (where someone has a life limiting condition) your husband should have the gold standard care and the support of a specific GP.... and where someone is home bound there should be home visits. If it was me I would complain long, hard and very loudly!! I note from your earlier posts you have support of Pallative Nurse Specialist and CHC.. I think I would try and speak to both of these and tell them about your recent expeience and in fact speak to any other health and medical professionals currently supporting your husband- OT, DN's etc and get their help as they have a direct link to GP surgery. Alos give PSPA a call. We havent had such an experience but when husband was first diagnosed and we were in that first stage of "what the hell" we did seek help and advice from our named GP, she was so very rude, ignored my husband and spoke as if he wassnt there in mind and body and basically told us she didnt/ couldnt/ didnt want to help. I, on the advice of the PSPA rang and complained...it did take a while for someone to get back to me but it did result in us being able to change to a different GP who I have to say has been very supportive even though he has never experienced PSP before. He is responsive to requests for help and is good at looking at and eliminating potential other issues and not just assuming PSP. We arent yet at home visit stage yet but I hope he will continue to support and he has triggered District Nurse visits recently when needed. I wouldnt worry about this alone but on Monday make a few calls and engage others to advocate for you and your husband. Gxxx

[Blacklabmum in reply to Millidog]

Thank you Millidog, Andrew lost CHC a year ago which is another story and something I am in the middle of , his treatment has been appalling from all parties even the local hospice as they instigated having his CHC removed, although his specialist nurse is lovely . The district nurses are good too. I worry, as I’m going through a huge complaint with the ICB, I am going to be labelled a complainer. I’m thinking of going to see the practice manager to have a chat. His named GP has been good up until now, despite an agreement he would review him monthly by phone or in person it’s been 5 months. Sadly although caring for Andrew is hard dealing with the system and health professionals is harder. Thank you for your comment xxx

[Millidog in reply to Blacklabmum]

Oh Blacklabmum I am so sorry to hear that especially to hear you lost chc funding and hospice aren't supporting as you need. We've just lost hospice support due to their funding cuts, they've changed the criteria and they deem my husband not to be in last year of life and we have chc review coming up in January so ever fearful. If I can be of any help to chat things through do send me a private message on the chat facility and we can exchange details to be able to speak. Where are you located ? Gx

[Blacklabmum in reply to Millidog]

I am so sorry about your husband, it is dire out here isn’t it? I’ll keep everything crossed for you. We are based in Wiltshire UK. Where are you based? I will private message you when I can work out how😂 xxx

[Joluu]

I'm so sorry to hear about your experiences. Receiving palliative care should increase the support from your GP not decrease it. Once mum was on the palliative care register at the GPs I only had to ring to say I had a worry and someone visited the same day. Please complain about your poor care Don't worry about being seen as a complainer I complained so much about our local hospital that eventually I was given a phone number to ring when we were on the way to And E so someone could 'step in before I needed to complain!'Sending you lots of luck

[Blacklabmum]

thank you Joluu, It feels that complaining is so common now. I hope your experiences are better now. I was lead to believe he would get more support and was even given a number to ring which bypassed the queue. It was good for a while but he’s lived 2 years longer than they gave him, we’re into our 6 th year. Maybe their patience is running thin. Thank you for giving me the encouragement to not let it drop x

[David750]

Hi Blacklabmun, this predicament of yours is distressing. Under covid lockdown GP visits to us were naturally curtained to emergencies. I looked after my wife (PSP) at home. Palliative care was given at the end by the District Nurses Palluative Care Team. I am in Scotland so not knowledgeable of your area, but I would contact your district nurse for a visit. Her opinion would hopefully energise your GP. If you have not already do e so I would urge you to contact the PSP Association's Helpline (pspassociation.org.uk) and speak to the Health Care Navigator for your area who has knowledge of local medical centres and connections to support you. She can also assist with CHC applications etc. All my very best wishes to you and your husband

[Blacklabmum in reply to David750]

Thank you David750 for your support and good suggestions

[Dance1955]

I know right but the GPs don’t know what to do with our poor psp/cbd people too hard basket it’s wrong we just want them to show an interest I had the same here in Australia they don’t do home visits so I had to either go alone for my husband or get a telephone appointment

However you do need palliative care I hope you get it keep asking for that 🙏🏻

So sorry for you in the end I just did research everything on the internet and ask for what he needed I aways got it but it was hard

All the best don’t give up on the end you’re his best doctor cos you’re with him all the time take care 🥰

[Blacklabmum in reply to Dance1955]

Thank you dance1955, I didn’t Realise you don’t get visits in Australia, that must be very hard. I think some of the problem here is many GPs are too arrogant to admit that they don’t know about CBD, it was omitted off of his notes and he was just given the diagnosis of dementia. I have sent them CBD info from PSPA website but no one seems interested.

[Dance1955 in reply to Blacklabmum]

Trust me I know there’s a lot of ignorance and no one wants to read how to care for our loved ones just don’t give up 🙏🏻

[MyDad1]

Sorry to hear about GP not wanting to to come to you . Complain to GP practice as they should visit you. Unfortunately gp's don't understand psp and when you try and explain about it they are ignorant and down right rude.

[Harshacceptance]

you have to fight for the support you need - it’s not complaining at all. My parents didn’t want to be a “pain” either or were scared they would be labelled as problematic.

Dad has CBD - I never know what stage to call it as it gets worse - he’s fully dependant on my mothers care and a team of carers, he’s completely immobile and unable to do anything apart from see what’s going on.

as has been covered the central point of responsibility is your GP under he GSF for palliative care. Walking away is not an option for the GP, it’s negligent.

On CHC, keep on fighting no for your husband. My brother and I have been multiple rounds with the ICB and continue to advocate for our parents.

I feel for you, I really do. As the ICB complaints team told me, you need to fight for your parents … as I was aghast given I was speaking to someone from the NHS.

[Sun-flowerwearer]

I keep reading your post and am so upset for you. Remember whatever job someone holds including doctors the majority are average, some are good or very good and some are poor or really poor. You unfortunately have found the rubbish side of the bell curve. My husband was Pallative care in his last 12 months and we had excellent support. His GP visited the house every 4 weeks. Hospice were very involved visiting well and we sailed through the CHC assessment with our Hospice Nurse attending the 3 hour home visit. It’s a post code lottery which is very wrong.

[Rose1sunflower]

I am so very sorry to read this. It really seems to be a postcode lottery. So surprised to hear the Hospice Care team aren’t doing so much either. When looking after a lived one and all the extra jobs you need to deal with to have to fight for car to us just the last straw, I feel for you. I know it’s more work but do you have a sensible helpful MP?

Good luck

[Blacklabmum in reply to Rose1sunflower]

Thank you Rose1sunflower, sadly my local MP is also a GP so I’m a bit sceptical about getting help from there.

[Rose1sunflower in reply to Blacklabmum]

Oh problematic! ( sorry for all the typos and auto correct!)

[Blacklabmum]

Thank you all for your lovely comments and good advice. Community Nurse are flagging up the lack of help with the surgery. Andrews GP is visiting him on Wednesday for a long overdue review. Good luck all on your terrible journeys