need some advice

as most of you know I was given 6 months to live 3 month by my doc I was added to palliative care register very poor prognosis I am receiving no support whatsoever from resp nurses palliative care pulmonary rehab im getting no support at all its bad knowing I can die any day from my ipf & copd does anyone know who I can challenge about my situation

25 Replies

  • I'm sorry to hear you're not getting any help Teaky. I can't help but I'm sure someone will be along that will be able to steer you in the right direction. It's jut not on your left in the lurch like this and you'd think your dr would have helped more by arranging something for you. Hope somthing gets sorted for you soon. x

  • Teaky, I'm really sorry to hear you're not getting the help you need from those who should be supporting you. The best people to talk to are the BLF nurses. Do call them in the morning - their number is 03000 030 555 and it's only the cost of a local call. I've heard they are very good, and I'm sure they will be able to advise you on who to approach and what to say.

    I do hope you get the support you need very soon. I'll be thinking of you - let us know how you get on, Jan

  • Hi Teaky good advice from Jabber. It's disgraceful that you've been just left like that. Ring that number they will help. Let us know how you get on. Take care. X

  • I'm so sorry to hear your not getting help. I would ring social services they are in charge of care for all ages. I really hope you get the help you need.

    Kim xxxxx

  • If you are on the palliative care register you should have been visited by a palliative care nurse. If that hasn't happened contact your doctor and ask why.

  • I am so sorry to hear that you are not getting the hep that I am sure you and your family need at this time. It is a shame that you have to waste your time fighting to get what you deserve. I have no advice except to say hope you receive the support you are entitled to. Kind regards Carol

  • Oh what an awful situation and quite scary that you can be left this way. Its hard enough just managing this disease without the added stress, hope to god you get the help you truly deserve xx

  • Oh teaky,big hugs to you,what a dreadful situation to be in,I realy feel for you.

    I see you have been given good advice, so please follow through,it is an absolute disgrace,hard to believe in this day & age.

    Thinking of you,please do let us know how you get on,

    With lots of love Wendells xxxx

  • Shout at Adult Services Social Services they are marvellous will talk to Community Care.Also your GP can talk to Community Nurses for you. We are in same position and only just starting to get this now. Good luck love xx

  • push push push and get others to push for you too if you can. could be an admin error and you have slipped from a list ... happened to me about a less important issue. best wishes xxx

  • How dreadful teaky-19. You should be getting all the help you need and more. Good advice given by others so hope that helps you. Please keep in touch and let us know how things are for you. Good luck and thinking of you. xxxxx

  • thank you all who replied I have an appointment with doc on Thursday I will be asking her to find out why I have not been contacted by palliative care services why no one has put a care plan in place for me

  • Like Julie said, push, phone around and said you fee bad and need help, social services, the helpline here as given above will find you someone who knows what to do. Stand firm. Also don't believe that statistics! You are you, even if you feel bad now. but I'm sure you can improve somehow. don't let whoever pronounced this sentence distract you from your real purpose; live every moment and don't let them bully you without any help. You say to them I was put on palliative care, where is the care I should receive!!! Be firm!

  • Hi teaky, so sorry you are going through this, you have enough to cope with. Ask about a community matron, they were an absolute godsend for my mum and I.

    You should ask about the gold standard for palliative care while you are there. If you are struggling to get to drs, get him/her to come to you. A drs waiting room is not the best place for you to be.

    Good luck


  • I was saddened to read the distress in your letter . I have had lung disease for 60 years but i cannot immagine how you must be feeling. It is hard work just getting thru the day without having to fight for help. . My thoughts are with you and i pray for you. .god bless. X

  • That is terrible, I would get on to my GP surgery as the referral, should have come from there, all the very best, stay strong Teaky, xx

  • Sorry to hear the system is failing you Teaky, all the advice here is good get in touch with every department in order to emphasise your need for support. All presuming you have the strength to deal with all this, take care xx

  • Aw Teaky I feel so much for you. I think everyone else has given you all the advice you need, so I just hope you get the help you deserve. Take care. Cheryl

  • id like to thank you all for your kind concerns I will let you all know how I get on when I see my doc on thursday

  • Wishing you the very best Teaky xxxx

  • I'm so sorry to hear the problems your having this is very sad when people need help they have to fight for it.

  • I was also very saddened to hear you are getting virtually no help. The disease and the outcome are frightening enough without being left alone to cope with it all. I am very lucky where I am in Scotland. Ido hope by the time you receive my message someone has been in touch with you. xx

  • Hi, I read your post with great sadness and I have endured a good few mths trying to find out what is available and what my father can expect from being on the palliative care register with the gold standard thingymibob!! Still not sure what gold standard means... Neither does our GP..

    I hope I can share my experience as a carer and may give you a starting point. I have felt lost and alone at times and have wanted to run n hide

    First of all if you have a District Nurses they can help you lots they arranged an assessment of health care needs, this involved a social worker and lots of questions on how you manage with daily tasks etc.

    If you can get referred to the palliative team from your local hospice you will have fantastic support from them, physio and occupational therapist. They'll assess your needs for equipment that will help you stay Independent at home.

    Hope this helps and you can pm me If i can assist you more.

    Don't go to the Social Services first. Ask the district nurses or GP on getting an assessment first for your health care needs.

    Good luck hope you have a better outcome. X

  • Hi Teaky

    Really sorry you are not getting the care you should have and deserve. Good luck at the docs on Thursday. Unfortunately we have to be our own advocates, even it seems when we are too unwell. You need to know what the care plan will be and when it will commence. You might want to ask if there is a named matron with whom you can liaise and who will have responsibility in coordinating your care.

    Please let us know how you get on sweet.

    Love cx

  • Hello Teaky, this sort of situation just makes my blood boil! How can it possibly be that you are not getting any help? Where is your GP in all this? I know what I would do, I would write to the local papers and shame the lot of them! Someone in this country needs to make a stand about this sort of treatment. You have enough going on in your head without feeling that you have been left high and dry! I have more arguments with my GP and various staff members over various things that I am convinced at some point I will be deregistered. Do you know what, I don't bloody care! Someone will have to give me another GP and I have spent all my life working so have put a huge amount into this country, one way and another! Please forgive me Teaky for going off on one but sometimes I just can't believe what I am reading! You need someone to fight for you as well, especially if you can't do it yourself! Some GP's, respiratory nurses, etc. are a disgrace to their profession. My blood pressure goes up whenever I have to visit the surgery as I absolutely know what will happen. Don't misunderstand me, I am not a moaning person but neither am I a doctor and I expect those who are supposedly qualified to be of some help to me. Take care and sorry for my outburst.

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