Caring for my husband at home : advice

My husband has stage 4 lung cancer and treatment options are at an end. 6 weeks ago he was admitted to our local Hospice as he had a chest infection. Last week he was discharged with a care package . A hospital bed was set up in our living room along with a commode , wheelchair , walking frame …you name it, we have it. He takes 30 tablets a day all of which I am sorting out…( nervously!! especially the morphine) .He qualified for urgent continuing care as I assume they don’t think he will live more than 6 months. He is lovely, and a very uncomplaining patient. However, neither of us are happy. We have carers coming in 3 times a day but on most occasions I send them away as, apart from washing him , I can’t find anything for them to do. That might be a failing on our part …who knows ? He can’t walk , and is very frail , even standing up makes him very breathless . We were told that we would enjoy some " quality time" at home together but this couldn’t be further from the truth. I’m sleeping on the sofa as I’m afraid to leave him overnight due to his weakness . We hate the fact that he’s not bathed, and that he has to use the commode in our living room. We don’t have a downstairs cloakroom so I’m up and down the stairs with bottles / bed pans. I love him very much but am wondering if care at home is the best option . I have had 2 knee replacements and need a new hip so am not that robust really. We don’t have any other family support and neither of are good at asking for help. I’m starting to wonder if we would be happier if he was in a nursing home . i could spend the days with him and we would know he was well cared for . Has any one else been in a similar situation? Thank you for reading x

Hi Sally … welcome to the canteen.

Sorry to learn of your curremt sitiation.

A holding reply before the forum calvary arrive … very quiet on here as of late.

One service tends to scream out … Fast Track NHS Continuing Healthcare.

Carers … as opposed to qualified nurses ? … under the control of the NHS ( NOT LA ? ).

Main CHC / NHS Continuing Healthcare thread :

Follow the colours … section :


Link therein to :

NHS Continuing Healthcare Fast Track process | Care To Be Different


**_Fast Track funding is not only for end of life

Many families are wrongly told that NHS Continuing Healthcare funding is only available for people who are at the end of their life. Not only is this incorrect, it often means that elderly people with significant health needs are wrongly denied the free NHS care they are entitled to in law.

Continuing Healthcare funding for care fees depends on the extent of your relative’s health needs, not what stage of your life they’re at. Assessments are supposed to be carried out swiftly, no matter what your relative’s degree of health needs. There is, however, a special process that should be used in emergency situations when a person is in a period of rapid deterioration or when a person is in ‘terminal decline’ at the end of their life.

National Framework guidelines, page 32, paragraph 97:

“Individuals with a rapidly deteriorating condition that may be entering a terminal phase, may require ‘fast tracking’ for immediate provision of NHS continuing healthcare.”

Nursing care is provided by the NHS, and NHS care is free – in law. The Continuing Healthcare eligibility criteria are based purely on care needs and NOT on a person’s money, and by looking at the criteria – and at the local authority legal limit for means tested care – it will be clear whether or not a person should receive full NHS funding for their care.

If your relative is in terminal decline at the end of their life or in a period of rapid deterioration, you can insist on them having an urgent Continuing Healthcare assessment. This is done using the NHS Continuing Healthcare Fast Track process (‘Fast Track Pathway Tool for NHS Continuing Healthcare’). Essentially, it’s a fast assessment to get NHS funding in place as quickly as possible.

Here are some of the key points to keep in mind about this NHS Continuing Healthcare Fast Track process:

It is used if your relative has urgent health needs and/or nursing needs and is rapidly deteriorating and/or in a terminal phase of life. It is also used if your relative’s health is likely to deteriorate rapidly before the next routine Continuing Healthcare review. It is not only for people at end of life.

It allows a quick decision to be made about Continuing Healthcare funding. As part of this, it allows appropriate end of life support to be put in place quickly by the NHS – free of charge – and it means your relative can have care provided in their preferred location, including at home.

The Fast Track assessment should be carried out by a registered medical practitioner (the ‘assessor’), such as a GP, consultant, registered nurse, hospice clinician, etc – but this person must have detailed knowledge of your relative’s needs. Unfortunately, families report that GPs and other medics often have little (if any) knowledge of the Continuing Healthcare assessment process, and it can fall to the family to ‘educate’ them in this respect. This can be immensely frustrating for the family at a time when urgent action is required.

In the Fast Track assessment the assessor makes the decision that person is in a rapidly deteriorating state and/or in a terminal phase and with an increasing level of dependency. This decision should be accepted and acted upon immediately by the NHS.

There should be no delay in providing free NHS Continuing Healthcare funding just because NHS or local authority staff are arguing or debating how the Fast Track should be used.

Your relative should be moved to his/her preferred place of care and have funding immediately put in place without having to go through the long-drawn-out ‘full’ multidisciplinary team Continuing Healthcare assessment process. The NHS is responsible for this. If your relative is already in a care home, and no longer owns their own home, it may be that the care home will be the best place in which to remain.

Once Fast Track Continuing Healthcare funding is in place, it should never removed without the NHS going through the proper review process, i.e. a full assessment process carried out by a multi-disciplinary team (MDT). This ‘full’ assessment process uses a form called the ‘Decision Support Tool’ (DST). Only once the Fast Track assessment is complete and funding is put in place should an MDT review process ever be started – and only if this MDT assessment is really necessary. This full MDT assessment process should never delay urgent Fast Track end-of-life funding and care.

If parts of the Fast Track form have not been completed, or if the assessor does not know how to complete it, or the patient cannot assist in completing it, this should never delay a decision about funding or delay NHS care being put in place.

Essentially, the Fast Track allows for a decision to be made quickly that your relative has a ‘primary health need’, that they have a rapidly deteriorating condition or are in the terminal phase of life, that their needs are more than ancillary to the provisions of accommodation by a local authority, i.e. the care they need is beyond the legal remit of Social Services.

Remember, ask for a Fast Track assessment if you feel your relative should have one. If this is declined, and yet it’s clear that your relative is declining rapidly, put your concerns in writing to the Chief Executive of your relative’s local NHS (Clinical Commissioning Group) and copy it to the Continuing Healthcare Team, the GP, all appropriate consultants, nurses, medics, clinicians, carers and the care home manager (if relevant).
If necessary write to your MP.

If it’s obvious that your relative needs urgent nursing care, you could also refuse to pay (or continue to pay) care fees at this point.

This does, of course, raise a further question: If a rapid decision can be made using the Fast Track process, why can’t all NHS Continuing Healthcare assessments be as quick?_**

I trust the above option MAY apply. here.

Worth pondering within the context of CHC / NHS Continuing Healthcare which fits the sitation as you have described.

Feel free to ask any questions … we’ll do our best to answer them.

Hello Sally,

So sorry to hear of your situation and I can see how hard it must be for you to have quality time together . If your husband is in agreement to move elsewhere I certainly think it would best for you to discuss in the first instance with your doctor and/or the district nurse team if they are involved with your husband’s care.

I am sure others on this site will be along shortly to give you better advice than me. They are a brilliant bunch and have lots of compassion as well as lots of experience in the world of caring

Thinking of you and sending you a big hug. Joan

Hello Sally
I am so sorry that ‘care at home’ is not giving either of you a good (or even ‘ok enough’) experience. My first suggestion would be to contact the hospice for advice, and/or Macmillan nurses if you have them or something similar in your area.
Our local one has good ‘hospice at home’ scheme that offers more support than just Carers. There could also perhaps be part time options where he goes in for short respirte periods, or just Monday to Friday for example

Meanwhile could you better use the carers as help for you? Perhaps as a sitting service so you can get out for a break or to visit friends etc. Or if hubby is missing being bathed, have them bath him while you go for a walk?

As you are finding its all too easy to fall into the “I can manage” trap. Yes you can mange and probably very well, but the question is for how long until exhaustion sets in, or your back or leg gives way?

All of this assumes you financially need the CHC funding. If not and you have the money you could look for a nursing home yourselves, either for temporary respite or for longer term.

I wish I could publish your post far and wide. I’ve just spent the past 4 hours ploughing through our local councils Adult Social services proposals… over 1,000 pages of bureaucratic faffle and jargon, whereas you have summed up all humanity and reality in one short message. Bless you both.


Hello Sally

I am sorry you have both reached this point. I looked after my husband after his terminal diagnosis with carers four times a day. We, too, had to move downstairs. A few random thoughts for tonight, to add to what others have said, but I’d be happy to answer any specific questions if I can.

Looking back, on reading what you say about quality time, I do feel that I was more his carer than his wife, towards the end. The lack of sleep definitely contributed to that but I think much of it was because I felt totally responsible for him and very alone in that.

Things that helped:
With the help of the hospital and GP I managed to get his tablets dispensed in Nomad packs (they have other names too, but plastic packs with the day and time on them so we just opened the plastic for, say, Monday morning then Monday lunchtime then Monday night).
I managed to fit a small single bed into our living room for me so although I kept waking up/being woken up I did have something proper to sleep on. How comfortable is your sofa? Is there any chance you could swap it for a bed?
My husband needed a lot of rest so I did try to sleep every afternoon when he did.

Things I wish I had done:
Gone out (as someone suggested already) when the lunchtime carer came just to walk round the block.
Tried harder to get a sitting service (there is a free one locally but I never managed to get a booking).
Looked after my own health better - I am still dealing with problems arising a year on.

Very random thoughts, but it’s getting late!