Trying again to write a post

Well I have tried so many times to write a post but keep loosing it. Well I thought I would tell you all what I found out, if you are on attendance allowance some water boards give you a discount, tried with gas and electricity but they did not do it, also council tax we go down a band, because George uses a wheelchair, and it is not means tested, every little helps when we have to pay for everything.

George has been having some pyso which is done privately, we have not heard from any of our referrals yet, speech therapist, phone today and ask if we have heard from nerlogical centre, said we had not, she said she had emailed them 3 times, with no answer from them, she was upset about it, so let's hope it all comes through soon. We are going on Thursday to Isabel hospice they are going to give George 12 sessions of exercise, and the nurse that came today said they do many other different things. Don't want to write to much in case it gets lost again love yo all you dear people Yvonne xxxxxxxxx

23 Replies

  • Yvonne once George starts at the hospice things will improve dramatically regarding referals etc. Just mention something to the key worker and the get things done. Brian said he was getting a lot of heartburn and nausea next thing you know she had contacted the gp and we had a script and medication delivered. any worries about appointments or referals they sort it out. Janexx

  • Thank you hopefully they will get things moving thank you soon much Jane xxxxxx

  • hi yvonne

    yes the hospice and community matron are great at sortign out appts / referrals when necessary etc etc









  • Thanks for the tip about the council tax relief, Yvonne.

    I have just looked it up on my I pad and will go upstairs over the next couple of days.....or when Roy goes to bed and print off the form. We are due to see the OT next week so will ask if they will Sign it for me.

    I have only found out about the med ex certificate for prescriptions!...been paying yearly!

    If you go to the cinema...did you know that you can get a CEA card so that the carer can get in free if accompanying the disabled person?

    Also, have you heard of a CER card?

    I have just registered for a CER card, which is something that carers keep on them incase they have an accident or emergency whilst out without the person that they care for.

    I have been wondering what my husband would do if I popped down the shops and something happened to me? He couldn't answer the phone or the door! He can't actually do anything for himself , nowadays,so he would be very much 'in a pickle' say the least!

    I think what happens is that you set out a plan and that is put into a database with the number on the card.If anything did happen to you ....hopefully they find the card and the plan would be put into action.

    I suppose another thing I might need to do is to organise a key safe.

    Sorry, started off with council tax relief and Here I am right down at the bottom of the page now!!!!!

    Take care, hope some of this is of interest.

    D x

  • Hi DenB I will find out about CER card we have installed a key safe outside but need to put keys in it hope all goes well with council tax x

  • Check your insurance policy about the key safe or speak to your insurer as some companies say they make your home contents null and void - ridiculous but what is the point of paying contents insurance if the company has got a small print clause about key safes. Some of them suggest the key safe should be out of sight which makes the whole point of them vis- a vis carers and emergencies i.e. paramedics pointless !Geoirgepa




  • Yes, cineworld is the cinema that we use so I know you can use a CEA card there!I think most cinemas recognise it Just look on the internet, print off and fill in the form, with a photo and send it off!

    The National a Trust have a concession for carers too?

    You apply for an Admit One card and any person that goes with you gets in free.that way you only have to pay for single membership!

    There is a book that is called"if only I had known that a year ago" which tells you of other places that the same sort of thing is possible.....I read about that on the internet last night.

    Every little helps!

    Love D x

  • Hi, there are so many things out there, that I certainly haven't had a clue about. here are a few I have found out about.

    1. Free pads from the incontance nurse, plus they are far better than you can buy!!!

    2. I got into our local Zoo free, as a carer!

    3. Marie Curie offer a "friend" service to us, I get a guy that come and sits with S, two hours a week, says he will take him out as well!

    4. Our local hospice, offer a 12 week day course, which S has just finished, they said, they will offer another place in a few weeks.

    5. Wheelchair assistance at Airports

    6. A card to say I am a carer and that my husband may be at home alone, if I have an accident.

    There is so much out there, that nobody tells you about, I have found some of this the hard way. I'm not looking for a free buck, just help, I would be willing to pay, but it seems the best help comes from Charities. One of which I have given my most precious thing, my daughter. She works far too many hours for one of them!

    Can we all add to the list, so everyone can get the benefits!

    Lots of love





  • Thank you for the information.

    More info.

    I called mum n dads council about their council tax Because of mums recent diagnosis of PSP. Apparently the council award a discount if patient is classed seriously disabled. Our council no longer make you fill a form out because they realise its so difficult. They contact the doctor directly.

  • yvonne

    I didnt know that you can get help from the hospice. How do I look into it. Who referred you.


  • In this area the GP refers people to the Hospice. We went to the Hospice to ask what to do. We went straight from them to the GP and within days someone from the Hospice contacted us. My husband goes every Friday. Any problem we have had they have helped to sort it as they have regular multi discipline meetings with the neuro rehab team, the GP, SS etc. They have contacted the OT when we have needed equipment.

    Contact your energy suppliers if you have electric aids, stairlift, rise recliner chair, hospital bed etc. They will put you on an emergency list and provide a generator if there is a power cut.

    As a carer I have had free entry to theatres, a zoo, children's soft play areas (with grandchildren), stately homes and gardens. Last week we visited a large private garden with our son and his family and both my husband and I got in for nothing as some paths were not accessible because it had rained the day before. We were there for 6 hours in beautiful sunshine.

    There is so much out there, it just isn't publicised very well.

  • Nannab.

    Thank you x

  • I think it must of been the GP they are really kind Linda came around on Friday felt like we had known her forever it will be the first time we have been there next Thursday xxxxx maybe you could look on line to see if you have a hospice near you our ask your GP hope that helps x Yvonne xxxxx

  • I finally made an appointment with our local hospice here in the U.S. as everyone here, including my social worker counselor, whom I saw through my employment, said they would be a big help and were not just for end of life, but for anyone with untreatable illness.. It was a disappointing waste of a precious and very rare free hour for me. Without a doctor's note that death was likely within 6 months, there was nothing they could do. They couldn't even recommend any source of assistance or information about local sources of medical equipment, which I really minded because they said they could get me a stair lift if I had that note. Feeling very much on my own these days, so I'm a bit bitter about it all. Wish I were in the U.k! Oh well, on we go. Love and peace, Easterncedar

  • Oh Easterncedar that's awful. Don't they have a day care centre? Is there any others around you? Perhaps your social worker could help getting you through the door. Or can your doctor provide something that could help you. Obviously, he won't be able to give you a note saying death is going to be within 6 months, but there might be something. Don't give up, although I can fully understand how you must be feeling. Is this hospice a Charity? You could try writing to the head of the charity, asking for clarification, why they won't accept your husband. Did they think you were after permanent care?

    Whatever happens, you know we are all here for you, let's have some of those bitter feelings expressed, so we can try and help you deal with them. It ain't gonna help you feeling like that and it's certainly NOT going to help your loved one!!!

    Lots of love


  • Oh my god we are lucky to be in the uk but unlucky to have this horrible illness hope you get the help you deserve x

  • Hospice here is a nonprofit reimbursed by health insurance. The insurance I suppose is the sticking point, but the very pleasant counselor there simply said they didn't do anything without that note. There is another agency here to contact, which I'll do the next time a spare minute turns up.

    Meanwhile, to continue my whining, my guy smashed the glass of the oven door in a fall last week. He was miraculously very little hurt, so I just went out and ordered a new one, counting my lucky stars. Then the new stove was delivered and the broken one hauled off, and trying to install it after work Thursday, I stripped a bolt on the electric connection and now have neither oven nor range until I can get that dealt with. Nothing seems to be going right just now. At least I have the microwave! and we are spending the weekend at the little loft in the mountains, where we do have a little stove, so I'll do some reheatable cooking for the beginning of the week. Maybe, in honor of St. David's day, I'll make faggots according to my dear grand mother's recipe. Just saying that makes me feel better. Thanks for the sympathy, Heady. And Yvonne. It does help!

  • Why is it, when one thing goes wrong, everything else has to come out sympathy? You're not the only one that happening to!

    Glad to hear that your guy is OK after his fall, that's pretty impressive to break an oven door. Never heard that one before. Bet your insurance company are kicking a bit!!! One lesson I have learnt from Peter Jones in Australia, is to shout STOP at the top of your voice. When S goes into one of his backwards spins, I have stopped a couple of falls by doing this! It's got to "stop" that's shouted, anything else, doesn't register. Must be a different part of the brain that kicks in!

    Hope you enjoyed your weekend away and your faggots!!!

    Lots of love


  • Insurance? No, I don't think that's a claim I'd pursue. I will try shouting stop, but the worst of his falls happen in my absence. He's too mobile for a wheelchair, too independent for day care. I think I should stop fretting so much and be grateful for his still being sometimes upright, scary though it is. Love, ec

  • Know that feeling!!!

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