View Full Version : How ill do you have to be?

3rd October 2012, 17:07
Hi everyone I haven't posted for ages but I need to get this off my chest today. Until now I have cared for my husband with just the support of my children -- which is how he wanted it to be , but at the end of August the disease fairly romped along and now, sadly he can do nothing for himself. He has gone from being able to totter along with his walker to being unable to weight bear or help in any way when we are dressing or turning him. He is unable to speak at all and is fed via a PEG -- and has still lost 7 pounds in two months. We have a hoist , a hospital bed and because it now needs two of us to care for him in the mornings and at night - he cannot turn at all in bed-- one of us does 'the night shift' every night. At the last hospital appointment the consultant discussed the fact that maybe we will only make one more visit to hospital -- after that they will phone or come to us. The ratings scale is completed each visit -- my husband is on the dexpramipexole trial -- and he scored 7. Yet despite this today we failed to be awarded CHC funding!! We had been told by the social worker who we also contacted two weeks ago that because we would need two carers it was too much for them to provide, so now we are faced with paying 400 plus per week for help. We are not entitled to any funding because my employer -- in kindness continues to pay me my salary during this period of extended leave and my husband -due to the poor prognosis he has been given- has been able to access his pension in full. That money is mine as well , i could live into my very old age --my dad is over 90-- what am i supposed to do ? Work til I drop after caring for my husband has taken its toll? How very unfair is this system-- apparently all of my husbands needs are social needs --dressing, washing etc therefore we do not qualify. When I argued that they are caused by the illness i was told that that does not matter!! The fact that my husband confidently uses an ipad to communicate meant that we only scored 'moderate need' in the communication area because he can tell me what he needs -- For goodness sake he is unable to speak!! Not sure if we will appeal or just carry on as family- my husband is desperately upset that all the provision we made for our lives after working hard for years will now go to pay for his care.

sorry about the length of this post -- hope you all understand how I feel


3rd October 2012, 18:29
Thanks for your post Looby. I cannot help you much but it is of great interest to me as we will be in a similar situation in a year or so. Life is not fair I’m afraid. I hope that you can appeal or reapply and Roy will have to have more of a problem Communicating.
Best wishes, Terry

3rd October 2012, 18:35

Print this lot out and send it to them. http://www.nhscare.info/ They are breaking the law in not funding your husbands care. There are solicitors who will take them on and win and charge them for the privilege if you can't persuade them to see common sense. We were refused care for Irene originally when they finally came to see her after 3 months. The lady threatened to leave when I took them to task for taking so long just to come. Irene was in a better state than your hubby when they came and they said a panel would review the information collated and decide but she would recommend rejection . I told them they were being ridiculous saying everything was personal care related and not due to ill health and if they rejected the claim I would appeal and win. After 7 months they finally relented and said yes and agreed to pay us back to the date of our original request.
I am still waiting for this as Irene died and as she was the person entitled and left no will they could not pay me unless I went through the legal process and applied for letters of representation to prove my entitlement. I am going through this process now and I will have legal costs to pay. Everyone else has paid out without question including a life policy for 10s of thousands. I do not know how they thought Irene in her state with very little income could have paid them!
They are absolutely incredible!


Good luck but don't back off.

3rd October 2012, 18:58
Hi Terry and John thanks for your support. The assessor did say he would come back in a couple of months if the district nurse team contacted him. However , at the hospital last week my son asked to see the consultant privately to discuss the deterioration in his dad's condition and was told there is probably only be a few months left - the original prognosis was a year and we have already reached 15 months so it may all be too little too late. just feeling like we are being cheated out of a calm, making the most of it time at the end of his life where i can be his wife not his nurse - and my children have some life outside of caring for their dad- and some memories not to do with what hard work it was for them . Bless them they do so well and so willingly but i still feel it is not ideal. The district nurse told me we were just too competent -- our intervention means no pressure sores and so we scored nil in this area-- no account taken of the preventative measures that keep skin healthy. So a large drink for me tonight -- whilst i can still afford the cost of the wine!!!

3rd October 2012, 19:26
Hi looby,

I am so sorry to hear about your hubby, we all know what's to come and you would hope that the people who are supposed to be there to help us, do what they are supposed to do, Nothing surprise's me any more about care with any illness and if its a terminal one that dosen't seem to make a difference to the pen pushers, I would raise hell ,,I know you have lots on your mind now ,But like john says Take advice from a lawyer who deals with this ,Its not only disgusting its downright insulting after what you have endured , John has suffered in a similar way and i hope you get what your entitled to, Makes me so mad ,when they can flitter away millions by inept people who are supposed to be experts ,I also would suggest you drop a line to your MP if you can , just hope its a Labour MP .

Wish you all the best


3rd October 2012, 19:38
Loony, Sorry you are receiving this shabby treatment. I thought that the partner's income was not taken into account when assessing contribution to,care. Like you I am facing much less income in retirement , as well as the loneliness. I am 60 and will not be ale to save the 10s of thousands we will have to pay for adaptations. My income (part time) was included in the assessment for help with adptations and we got no support; financial or otherwise. Would like to knoe if there is a solicitor in the Leeds area who is e spent in CHC cases.
I wish you and your children all the strength and support you need.


3rd October 2012, 19:42
Hi Looby,

You are not alone girl. Our charity and your MND friends on this forum will stand shoulder to shoulder with you. The PCTs are run by unscroupulous individuals who have no respect or understanding of pwMND.

I too cannot talk at all. The majority of face muscles, neck, throat, pallette, larynx and tongue do not function.

In my communication domain of the Decision Support Tool, I too was scored as "moderate". Clearly this is an unreasonable assessment. I too argued my score is "high".

It is very easy for PCTs to manipulate domain scores, causing delays and breaking the will/spirit of vulnerable, isolated people.

Actions open to us;

The MNDA is accountable to us, and should provide DST guidance.

Contact Ciiizens Advice Bureau

3rd October 2012, 19:58
Hi Graham
as you know one of the domains is challenging behaviours --after he had given his verdict he sure saw some of that from me!! And let me say i am an expert at it -- in my professional life I ran an inclusion centre! I asked him to explain /define the difference between social care needs and medical needs -- I was not satisfied with his answer as it did not take into account the fact that the illness is the cause of the social needs. No way will this be the end -- i just need tonight to think about where i go from here. I texted my lovely OT who is amazed and is composing a letter tonight -- and Pete yes I do have a Labour MP. Next stop his constituency office!

3rd October 2012, 20:03
I was assessed last week for continuing health care funding and am awaiting the outcome. I need 2 carers 4 times/day. I too cannot speak, cannot stand without help and then only for a minute or two, carers dress and undress me, shower and toilet me and start peg feed. Our mnda contact said if I don't get she wonders who will. We live in hope.

3rd October 2012, 22:19
Hi Looby,

As John explained the appeal process is long drawn out and plays into the hands of the PCTs.

An approach is to demand a "Coughlan compliant" decision. See www.nhscare.info . The DST does not, in law, provide the answer to whether or not your husband is entitled to continuing care.

Chris, because I can weight-bare, I was scored "moderate" in the mobility domain despite requiring two people to transfer. I argued that I was "high", being bed-bound without assistance.

There is a clear neccesity/obligation for the MNDA to support us in a class action in court. Robyn, can you advise.

4th October 2012, 23:29
HI all really interesting and scary reading the posts on chc last week i had to call in the crisis team as my hubby could not use a stand hoist any more,so now we have the rapid response twice a day until we are assessed but they gave me the impression with mnd we would be bound to get it,but i get the impression from the carer that come to the house that i am doing to well so not helping my seif ,
how stupid that doing your best for your loved one you may not get the much needed care to give you both the quality of life that you need in an awful situation

5th October 2012, 09:13
Hi petal,

Reading your post just about sums up the care side of things, you do your best, and they seem to see that as your not worthy of help, Kind of odd logic really, I would tend to play there game and take a back seat ,if that's the only way you can get the assistance you need, and you will need help now so try to think of it as a promotion, now your able to oversee his care and not put yourself at risk of injuring yourself ,that isn't going to benefit anyone,wish you all the best.


8th October 2012, 17:14
Hi Looby, don't lose faith, try again. My husband is of similar stage being unable to move & on 24hr ventilator. Without the input of the MND nurse at Oxford I would still be struggling to get through each day. Find out when the panel are next sitting & get a professional to write a report. Good luck.

9th October 2012, 22:38
Hi looby

Just read your post with interest as my mother has had her chc assesment today, even though the assessor concluded that she had a primary health need I'm not holding out much hope as the decision lies with others. I was concerned that your husband was scored nil on skin condition, I have been reading extensively since I was informed of mums assesment and I remembered something that may be of interest. This is from the national framework for chc assesment.

The decision-making rationale should not marginalise a need because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need will this have a bearing on NHS continuing healthcare eligibility.

I'm quite sure, that for all the best will in the world you have permanently reduced or removed your dear husbands risks of bed sores or skin integrity problems you are in fact successfully managing it through you round the clock care.

Under the heading of psychological problems It was deemed my mother had no problems, I explained my mother did have problems with emotional liability and depression as a result of her disease but as she was medicated with fluoxetine these issues weren't noticeable, but if she (
the assessor) wanted me to discontinue the meds she could come back and see how many pschycological problems she ( my mother) had when she returned, she agreed this was not necessary.

Chc is notoriously difficult to get but I think you should request a review as soon as possible. My mums Macmillan nurse was very helpful and gave her opinion on my mothers condition. Try to get as many of your husbands mdt to input information this an only help your case.

Good luck


11th October 2012, 16:53
Do you have a MND nurse or long terms conditions nurse involved? My Grandma's MND nurse got my Gran Fast Tracked for Continuing Health Care funding. There is no way you should not have it by now, if your husband requires so much care. My Grandma at the time did not have issues with skin breakdown, behaviour problems, continenance, etc when she got the funding. She got Fast Tracked on the fact that she had MND and it was progressing quickly. I would definitely try the Fast Track and get a health professional to do it. Good Luck and stay strong. X

16th October 2012, 21:14
Hi everyone just want to say thanks for all the support and suggestions. Our MND nurse and hospice nurse are writing a submission for the appeal and I am going to see the MP at his surgery. so i haven't given up yet!!! Best wishes to evryone Lyn

29th December 2012, 22:16
Hi everyone
just thought I would update the situation. Just before Christmas my husband was re assesed for CHC. I had requested a different assessor and this time I was much happier with the process. The assessor gathered the opinions of the MND Nurse . Hospice Nurse and district Nurse before coming to meet us. She did not mention the 'domains' just talked about all aspects of my husbands needs and difficulties. Before she left we were told that we would receive the funding although due to Christmas it would be a few weeks . Yesterday I had a phone call to make an appointment to meet the care coordinator and was told we are to receive 5 hours per day , 5 days per week and 3 overnight sessions. The CHC assessor has also ensured that the carers we are to have all have extra training in working with people with MND, It really is the best present I could have!! Sadly, it hasn't arrived a moment too soon as Roy's disease continues to progress and he seems to grow weaker every day, his arms are now completely useless and he can only move his thumb to try and type --painfully slowly on the ipad.

Our original application is now something of a mystery . We never received appeal papers although they were chased by me , the hospice team and the MND Nurse. The original assessor never responded to email or letter from any of us and I have now heard is long term sick .... curiouser and curiouser .......

29th December 2012, 23:03
Hi Lyn,

It's been a long hard time coming for you two, just a shame and disappointment for all involved or not being the case,good news that at last through your relentless effort and care you have managed to get some welcome help.please give my very best to my name sake and brave warrior,here is a virtual hug from me.

Love Roy..

29th December 2012, 23:14
Hi Looby,
Glad to hear your good news. If you have not submitted a new application you should receive repayment for any care expenses you may have had since your original application date. Ask for a form for this and it should all be repaid. If you are not happy with the level of support you have been offered ask for more. Make sure you leave yourself able to cope for Roy's sake.


30th December 2012, 17:08
I am also glad to hear your news, I can only add that the other assessor being 'on long term sick leave' often means 'was crap at their job'....sorry to those who really are on long term sick leave due to a genuine medical problem.
I hope he gets the care he deserves and you feel supported.
Good luck

30th December 2012, 21:47

I'm pleased that you've finally got help with care albeit taken longer than it should. It's a shame after reading Graham's continuing saga of poor nhs care..
I wish your family a very Happy New Year and everyone living with MND and hope 2013 brings all of us some better news.


31st December 2012, 12:29
Hi Looby
I am a Bulpar sufferer and note the above threads with interest. We were refused funding on the basis we cope and we have funds available which hurts us both as we have not worked all our lives and paid our dues only to spend it on our own healthcare. I hope your position reaches the required result for you. It seems our carers are penalised through their competent management of our illness !
It is like phlegm - good to get it of your chest !

mrs m
2nd January 2013, 19:50
Hi looby,
im really pleased that this issue has been resolved for you and roy. You have enough to deal with without going through that farce!
best wishes
mrs m

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