More from CHC

More from CHC

You may remember V and I applied for funding in September 2015 and were turned down . We went to appeal and after a very delayed hearing in May of 2016 we were turned down again and finally succeeded in getting funding after a second assessment just before Christmas last year . Back in August I tried to instigate an Independent Review Panel but was told to wait until we had had the results of our second assessment .Lots of letters from me and few replies after Christmas as the Independent Review lot failed to answer so frustration building . I eventually got through and having already given an outline of how I was approaching our case the previous year I was told there was to be a "desk top review " .

The letter came this morning saying they have decided we were eligible at the time of our first assessment and therefore would backdate funding to 1st October 2015

Whilst that is wonderful news financially I have to say that it is all a bit late as what I needed was the funding to pay for the care a year and a half ago when things were at their most difficult .

Any way the direction my appeal with the IRP was going to take relates to what is almost a hidden paragraph in the NHS guidelines for funding .

Para 38

"It is also important that deterioration is taken into account when considering eligibility including circumstances where deterioration might reasonably be regarded as likely in the near future "

This was totally ignored in our first assessment and at appeal all the deterioration information we presented was deemed inadmissible by those conducting the appeal . They categorically stated they could only look at my wife's eligibility as on the actual day of the assessment . This seems to be common practice so I hope the above information is helpful for those still battling to get funding.

Garden looking spring like and V sitting in the sun by the front door but not for much longer I fear as things continue their downward spiral .

18 Replies

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  • Oh George, that's criminal! As if having the money refunded is going to make any difference. You barely had any help, because of the lack of funding. You needed help and support then, not money back now.

    Somebody's head should roll for this. All I can say on behalf of the rest of the human race, I am so sorry you and V have been treated in such an incompetent manner.

    Lots of love


  • Congratulations!

    And a very big thank you for highlighting that section.

    Your garden is wonderful so well cared for and allowed to find its shaggy shape too. You must be a superb gardener. Is that a pond hidden at the back of the photo?

    And what is the tree in the tub?

    I hope you don't mind me asking all of this... I have also enjoyed the peace of the photo.

    Yes, Liz got out again into the garden... I fear this summer will be her last for managing that. So I understand some of the sadness re your wife not being able to do that much longer. Commiserations.



  • George this is disgusting, you had to fight so hard and for so long, you struggled for such a long time when you should oh been getting the help with V. Hope the sun shines for a while so that we can all enjoy the garden, yes your garden is lovely. Big hugs George. Yvonne xxxxx

  • I saw your post Yvonne and I think you have some hard decisions to make . Your description of how things are make my life seem like a doddle . You really can't go on indefinitely like this or you will breakdown . Sorry to be brutal but for your own well being do think about a home .You have done more than enough .

    love Georgepa

  • George I promised him I would keep him home. Yvonne x

  • Yvonne , we all promised things without realising the complexity and unpredictability of this illness and the toll it takes on carers . If you were suddenly to break down George would have to go to a home maybe not of your choice but one which has a vacancy . Surely it would be better to go somewhere of your choosing and in your time . Nobody would think any the less of you for making that decision, you have done everything you could have done for him and more .


  • Thank you George good advice, going to think hard about it. Xxxx

  • Hi Kevin- The tree in a tub is a twisted Hazel - that one is about 25 years old and as it is in a tub it is almost bonzied . It's quite a small garden so not that difficult to manage .

    I do have a small pond but it is not in the picture in fact it is by my feet where I am taking the photo . Where you are looking I think is the area where our cherry tree is and it is surrounded in a square with railway sleepers and under the cherry I grow an assortment of ferns which are just beginning to unfurl .

    I think most of the garden is pot luck ( excuse the pun ). Somethings grow and others look at me and keel over.V and I have been arranging it and rearranging it for the past 25 years and it is a huge sadness that she can't appreciate it any more let alone work on it .

  • Ah, I was looking beyond the cherry in the background.

    The Hazel is wonderful.

    I really like messy gardening. I am not so very good at it. I just end up overgrown!

    Liz and I share so much through the garden. Its one of the main areas we just enjoy the beauty and joy of things together.

    Yes, I see Lizzy itching to get out into it... There is so much damned loss with this illness.

    Warmly and be well.

  • I find all this so disheartening. It increases the feeling of a lonely road, uphill.

    I will remember that paragraph when I gird my loins to tackle CHC. At present I don't have the energy for the battle.

    Hope you are enjoying your lovely garden. Just my sort. Although mine is similar but more unkempt !

    I have made a start in this lovely weather we are having.

    Love from Jean x

  • Beautiful garden photo - it all looks so lush and startlingly green. Are we on the same planet? I saw my first purple crocus today, and there is still a lot of snow all around, although going fast under a chilly rain today. They say it may get up to 22C next week, if you can believe it. What a pendulum!

  • My mum got awarded chc a week before she died. The system is a farce. X

  • You are so right !

  • Oh no Doreen I am so sorry. Georgepa thank you for your post we have had the DST and now the assessor is gathering all the evidence. I don't know what to think about which way it will go but I have put in what we are probably going to be dealing with as there are indications already. I don't know why it is so difficult to get CHC its bad enough dealing with a loved one with PSP/CBD..

  • Good luck Martina. I hope you are one of the lucky ones. My husband got it in January. He died in February!


  • Thanks Marie I'm so sorry you got chc so shortly before your husband passed away. I'm wondering if anyone gets the funding in time for it to really help?





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