Hi, I've seen a couple of items on here regarding the palliative care and making sure its on medical records.My husband was diagnosed 16th December 2024 with CBD after seeing a neurologist.
We have been seeing the parkinsons physiotherapists and got an OT that is due to come and access our home for his current needs.
When I went to the doctors asking about speech, OT, physio I also mentioned palliative care and should it be mentioned on my husbands medical records, she advised I dont believe it is necessary at this time as he is looking fit and well, but im trying to think of the future and sorting things and getting them in place. I also mentioned speech therapy, which she said he didn't need at present. I have noticed that my husband coughs abit like clearing mucus, as I have late have been (time of year) but his seems to be on going, after reading on someone's post about coughing, is this something we should see the Dr about?.
Would appreciate any suggestions on palliative care and coughing.
Thank you 😊 xx
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Birdie04
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Hi Birdie, I was given the advice of get as much as you can in place sooner rather than later as symptoms can progress rapidly or new symptoms appear without warning. Actually SALT was the very first referral our neurologist made along with physio. I would suggest requesting the SALT again, they can assess swallow currently and will review and follow up as things change. They are able spot things we can't just being with someone and the can advise on coughing, mucus, saliva etc. They are also your link to arranging voice banking, info on PEG decisions etc.
Regarding the coughing to clear mucus, this could be because you husbands cough is not as strong as it used to be and he is unable to clear it, it could be tiny food particles held in the mouth/ throat and either stuck or going down the wrong way into the windpipe, all quite common with psp/cbd and can be the cause of chest infections and more serious conditions so I would speak to the doctor again about SALT referral as they can advice on this as I say; and maybe future thickened liquid, food choices etc and GP can prescribe medication to help. People may have other solutions but my husband takes Carbocisteine 3 x day and this has helped with the coughing and clearing mucus.
Regarding the palliative register I think I would insist. It's great your husband looks fit and well but things can change so do explain a little to the doctor about how the illness can progress and explain you want to get as much in place now when you have more time and energy to do it rather than later when you may not. The palliative register is for anyone with a life limiting condition not just end if life. So insist as this will help when dealing with the surgery and other health professionals in future as they all access your husbands GP notes abd it may prioritise their involvement. Also do make sure you are registered at the surgery as your husbands carer so you are able to speak and act for him. BW xx
Thank you Million, this is what I explained to our GP getting everything in place sooner rather than later, also I will make an appointment about his cough. I really do appreciate all the advice you have given and will be acting on it first thing tomorrow.BW
100 % get things in place now - dad was diagnosed Dec 19. We only realised his diagnosis wasn’t accurate on his medical records and that his condition wasn’t palliative in May 23. In retrospect it caused a lot of problems. He went the standard, Parkinson's before CBD diagnosis.
It’s a palliative condition and they should be on the GSF with the GP to assist in unlocking the various aspects of support / referrals when it is needed.
before his recent CHC assessment we pulled his care plan and it had Parkinson’s as the diagnosis, I hit the roof. CBD is very rare and ultimately presents differently we now know, so it’s critical that the diagnosis is right as the NHS is tickboxes and paperwork ….
Thank you for your response, am definitely going to insist on getting things sorted. I will be calling the Dr first thing to go over this again, I am registered at the GPS as my husbands carer, will be more insistent this time.BW
You've gotten great advice above regarding the palliative care.
Regarding SALT, definitely get this started sooner rather than later. Breath support and keeping his muscles (mouth, tongue, throat) working as long as possible are important. While it may not be apparent to the Dr that it's 'needed' yet, the progressive nature of the condition means you want to try to hold onto any function for as long as possible, and SALT will help with that.
We most certainly do, and thankyou for your advice. Got appointment for next Monday (earliest appointment available) I am hopeful that this time round something is put on his records 🙏🤞Best wishes
Hello Birdie, my husband has PSP. Our Gp referred him to Palliative Care as she felt they could help with pain relief (he has pain in shoulders and neck due to tightness of muscles). They have been brilliant with regular phone check ups if unable to visit. They got fast Track CHC last year and we have a review today.
Definitely get SALT referral, to give advice about the coughing. He doesnt use thickener in drinks but has thicker drinks like hot chocolate and thicker fruit juices. He was given carbocisteine a year ago but it didnt help. He is now on liquid carbocisteine, as he cant take tablets now and this helps thin the mucous. He also has a cough assist machine from the respiratory clinic.
As others have suggested if possible get things in place before you need them as everything these days have long waiting lists!
Thankyou, yes I keep seeing about getting things in place and I'm trying my best to do this, Everyones advice on here is so much appreciated it is such a comfort to know there is this great support network with great advice.Many thanks
Have you seen the Carers booklet that PSPA produce? It does give some useful information on things you are entitled to and what can help, Blue Badge, LPA, etc. Not all need to b e done straight off but it does give you some idea what is out there. I've also found the Carers Zoom calls useful.
Hi Birdie04, I agree a SALT should be engaged as soon as possible as while your husband is still talking there is an opportunity for voice banking. The PSP Association can help with this financially alongside the SALT. Phone the PSPA'S Helpline (pspassociation.org.uk) and talk your situation through with those who understands and can support you. All my very best wishes to you for your difficult journey 🙏
Thankyou, I will call pspa today. Seeing our GP next week to hopefully get these things sorted. 🙏 it is sometimes a battle to get them to listen or take on board what I'm trying to achieve. Getting things in place while I can, fingers crossed they will hear me this time 🤞Best wishes
PSPA were amazing when I called them , I received a pack of literature consisting of booklets for different professionals , GP,OT, SALT etc a godsend !
I have had the same issues regarding being registered for Palliative Care.
We saw the GP last week to discuss an Advanced Decision Statement and I mentioned this. His response was that Palliative was only if there was an estimated 6 months of life left and that my husband was nowhere near that. I'm not sure whether to insist again as we're seeing him again today, or try another GP at the surgery.
Wishing you all the best in putting everything in place. It's a hard journey.
Yes it is. Seeing GP next week (earliest appointment) as was told pretty much the same as you with your husband. After seeing other peoples advice about getting things in place earlier on, I'm trying my hardest to do so, but coming across refusals seems to be the norm. Like you I think I'm going to have to insist,.I will call PSPA for advice before hand so I'm better equipped.
If you have one, I would suggest getting in touch with your local hospice and tell them about your husband and ask if your doctor is correct in saying he does not need to be registered for palliative care until he’s at death’s door! If they’re anything like mine, well I hate to think what they will think about your doctor!
So sorry you appear to be having difficulties with your GP; when I was diagnosed in April last year, I seemed to have been put on everyone’s list, with the exception of the Parkinson’s nurse - I have asked for this service but am still waiting. With respect to palliative care, I’ve been referred to our local hospice, have been to their daycare facility, have had a week’s residential respite care, have regular physio sessions along with reflexology monthly, and finally I attend weekly quizzes with them via zoom. So - what I’m trying to say is that my local hospice offers far more than palliative care and if you have one, you may be missing out on so much. Quite frankly, I’d by-pass your GP and contact them direct: they can only say they’re unable to do anything without a referral from your doctor. As far as your doctor is concerned, get in touch with PSPA and ask for a copy of their guide for GPs; I’m almost sure it informs them to arrange palliative care! As for the cough, I do not have nor have ever had a cough but I have a cough machine which I use daily in an attempt to increase my lung capacity as well as clear any mucous from my chest. I must admit though that I can’t recall how or who referred me for this, but until your doctor pulls his/her finger out and starts to take your husband’s case seriously, you’ll never know what’s available to you
Im grateful for your response i will be asking PSPA for a guide for GPS. I really don't feel they are getting the full picture. To be told my husband looks fit and well, managing everything very well is not really hat we need. We need things in place now so as not to have to with this later along the journey.We have a wonderful hospice nearby, I may call them and ask for advice.
Thankyou for all your input, really appreciate it 🙏
Just been reading others’ responses and seen the bit about ensuring your registered at the docs as being you husband’s carer. The surgery and all other health professionals now have my husband’s mobile as the first point of contact as I have difficulty speaking, especially on the phone. I often hear him replying “No, but I am her husband. She’s unable to speak on the phone “; I say often, but it’s less frequent now as the various agencies have became used to it.
I just wanted to emphasise some of the information given to you by others here, having been my late husband's main carer through the stages of PSP. He died in 2022 by which time I had learnt so much about PSP and how to have to fight constantly for the correct support needed at the right time. I would use the resource of the PSPA Helpline before having any meeting with a health professional, if I was you, as the PSP / CBD journey is one that can change for the worse very suddenly. One thinks systems are set up to manage things at home but then there'll be a crisis of some kind and the patient's condition dips and never gets back to where it was [ and certain pieces of equipment that one spent many hours fighting to get are no longer relevant. ] I do remember that the local hospice team were on board a year or more before his death and while he could still speak, a senior professional [ nurse, I think ] came to our home to have the difficult conversation about my husband's wishes concerning where he wanted to be when he died and what interventions . egs. DNR, no to a PEG, avoiding going into hospital unless he broke a bone or split his head open, he did not want to have. I think he then signed this as an Advanced Directive and it was important that this was drawn up while he had better cognition.
The SALT was invaluable but was always rushed. Too many patients on her list! Her help re. developing feeding and swallowing issues was vital but I wish she had found time to help with communication once he was unable to speak. With PSP, Paul became very frustrated and angry that he couldn't express his thoughts, wishes etc and this was very hard for us both. He ended up throwing simplistic word boards across the room and getting very upset, as did I.
I'm sorry to have written so much but looking back, my key thing I regret is wasting too much of the precious time we had left together going to hospital appointments which exhausted us both for days and achieved nothing. I do wish that he'd agreed to leave his brain for research [ but no way did he want to talk about that ] but there is no cure sadly yet. As his abilities ebbed away, together with our adult children, I stood down from putting him through more MRIs, observations of his failing mobility, eye tests etc.
The most precious and valuable moments and memories in those last few years are of taking him to his favourite outdoor places with our children and grandchildren for as long as possible and making sure that he knew he was always truly loved.
Bless you I am so sorry for your loss and take so much from your very honest heartfelt words. I believe it is hard to get the right balance and I totally understand about being truly loved and spending and doing things with the family. I keep seeing that things can change so quickly with PSP/CBD and feel the need to be organised and ready for the unexpected, but I suppose what really matters is being with your loved one spending precious time with them and making as many lasting memories as possible. Our journey is just starting, a very difficult and heartbreaking one that neither of us are prepared or want to take. But reading yours and many others journeys, I am beginning to see that enjoying life together, doing things, making memory's is the most important thing for us all us all.Thankyou for your honest post I have taken so much from it. 🙏♥️
Hope you and your family are coping ok, and are getting all the love strength and courage from one another to continue and get by.
Thankyou so much for your lovely reply. Our son, daughter and I are coping much better now in year 3 of the grief journey and I've benefited a lot from some grief counselling. I think that for him and I the loss of the ability to speak for that last year was the saddest thing to deal with. Carers had no idea how to handle the situation when my husband got frustrated and then angry and very upset. They just wanted to increase the dosage and frequency of giving him a prescribed anti anxiety drug [ I can't remember its name but it made him very sleepy ] but he would quickly push the spoon away.
As much as possible I would try to send them out the room, hug him to me and try to soothe him. When he calmed down, I was sometimes successful in distracting him by playing one of his favourite jazz records. There were times he tried to push me away but it was so not him. It was the horror of the illness. This behaviour came to the fore about 5 months before the "end of life" stage but became much less the last few months as he became more bed bound and weaker.
Do try to look after your own physical and mental health [ I got so sick of people calling me "strong!" ] and let me know if I can help you in anyway.
Thank you for this lovely message, I cant even begin to imagine, I try to take one day at a time staying as positive as I can. We have two beautiful caring daughters and their partners and four grand children. With the love and support of our family and great friends we will somehow face this dreadful desease. I cannot even begin to think of the future without my husband, so instead I deal with each day. I really do appreciate your heartfelt words and kindness. It goes along way when we share precious time to help others. Thank you Suzanne 🙏Sending love to you and yours
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