Care at home for people with a terminal illness: social services

Most people were living at home when we talked to them, though almost all had spent time in a hospital, hospice or nursing home. Many received care and other support from family, friends and neighbours, but others felt quite alone, and relied heavily on care provided by health professionals and by social services (see also ‘Nursing’).

His wife, who is a trained nurse, gave him nursing care and emotional support.

Age at interview 70

Gender Male

Age at diagnosis 68

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You were saying that your wife gives you a lot of emotional support?

Oh absolutely yes, and that is… I mean again… I have to say I’m very fortunate with my wife as not only is she an excellent carer but she has a very good understanding because of her own profession, she has a very good understanding how I feel and of course weve been married for forty-nine years so she recognises that, by looking at me;

I mean some mornings I know she gets a bit worried because some days I look… my… I go yellow and all sorts of things so I’m fortunate, I have someone living with me who cares for me very very much anyway but who also recognises my needs;

All I wish is that she would accept a bit more physical support, from outside, but I’m afraid she won’t.

Can you tell me the kind of things she had to do to care for you. I know you said shes got a nursing background so that gives her extra skills, but supposing she hadn’t got a nursing background would someone in her position be able to cope?

With difficulty because there are certain things for example because I am chair fast I would very quickly develop bed sores, very quickly. Heels, bottom, shoulders. But my wife is very well aware of those problems so the district nurse that comes to see me is amazed [by] the condition of my body, but then she knows and she says, “Well it’s good because I’ve got some patients who have got lovely carers but just got no idea about massaging and oils and different ointments” and I’ve never actually suffered with any of those things.

I had the beginnings of a sore bottom a couple of weeks ago but my wife then put extra effort. She put extra effort into that and it’s cleared up and I’m very comfortable now. But anybody like me definitely will need that kind of help. Now the way to get that, I just mentioned the district nurse, and again they might have to insist on it and that is for the carer or the patient or both, through their GP to insist that they get a nurse in at least once a day and it needs doing at least once a day to give a proper massage of the points that are mostly in contact with the bed or the chair or whatever;

Without that then a patient will very soon become very ill because a lot of terminal people become terminal a lot faster because the nursing care isn’t to the standard it should be.

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Explains that she is an immigrant and would like to have more of her family around to care about…

Age at interview 67

Gender Female

Age at diagnosis 56

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I don’t have anybody to talk to apart from, saying to my sister-in-law, “I went to the hospital today” and so I don’t know anybody like my family I mean. My sister-in-law, my brother… they is not even together, we just friends. You know, she could say, “I don’t want to know”. But I just want a member of my family to understand a bit more;

I’m in a strange country they is the only one I’ve got. I’ve got nobody to run around to. I’ve got no cousins near, you know, all I’ve got is them;

When you say you’re in a strange country do you mean you came to this country from Jamaica;

Yes, yes.

What year was that?

1962;

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If a person wants to remain at home the GP, or other health professional or family member can contact social services and request a Care and Support Needs Assessment. A health or social care professional then visits the patient, decides what personal services are needed and works out a ‘Care Plan’ – a written statement of a person’s needs.

In theory, services at home are based on what a person needs rather than what the service can offer, but each area throughout the UK has its own guidelines and criteria for what is available.

One woman had spoken to the social services Care Manager while she was still in hospital. The manager had worked out a Care Plan for when she returned home. She found that although social services had agreed to the extra care she needed, the necessary help wasn’t always available, particularly at weekends. The agency that social services used couldn’t provide all the help that had been agreed. She also found the service inflexible. People would help her for the time that had been allocated but no more. She stressed that it is important to ask for what you need.

Explains that the agency used by social services cannot provide all the help agreed in the Care…

Age at interview 61

Gender Female

Age at diagnosis 59

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Well one of the things you said to me on the phone was that it was something that you mentioned in the first interview and that was the difficulties of when you’re on your own, you come out of hospital;

Yes.

And the support isn’t really there as much as you would want to;

No, it isn’t but I’ve learnt that by talking to the Social Service Care Manager she has given me various bits of information which I can now draw on. Before I left hospital she devised a Care Plan for me for somebody to come in first thing in the morning to get me up and for somebody to come in at bedtime and help me go to bed. Well, since then I’ve discovered that’s not enough and I now have somebody who comes in at sort of tea time and helps me to get a meal at tea time;

So basically… you have to ask. Sometimes the help is there but you have to make the right place to ask and I think that’s the difficult bit finding out who to ask.

How did you sort of discover who to ask? Was it through the Macmillan nurse?

Mainly through the social services lady, I think.

You just rang them up?

Yes I was given her name and telephone number whilst I was still in hospital I was going to show you. That’s the Care Plan that was devised for me and so I contacted her.

How is the Care Plan worked out for you?

The lady, her name is [name] she simply asked me questions and said ‘What do you think you need, will this be enough?’ Because part of the problem there is that you agree to the Care Plan whilst you are still in hospital not really understanding what you’re going to need but it has been assessed a couple of times. She has been in touch with me and said, ‘Is this enough or do you need more?. So that is when we were able to build a bit more in;

The drawback though of course it that I did not appreciate that social services do not actually employ their own staff they actually use private agencies and even though the social services may agree to you having this extra time the agency has to be able to find the staff to cover it and that isn’t always easy. I haven’t been able to have help over the weekends except Sunday. I can have help Sunday tea time, I can’t have help Saturday tea time because there isn’t anybody that is prepared to work;

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Another woman complained that her home care worker never made time for conversation. She also wished someone could take her out of the house for half an hour.

She would like someone from social services to make time to talk to her or take her out.

Age at interview 67

Gender Female

Age at diagnosis 56

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What things do you think should be happening for people who live on their own?
I don’t think they should be sent home;

They are sending them home, [assuming] that the Social Service are looking after them but they are not. A girl came in here this morning, and she said to me, ‘Can I make you breakfast?’, and all she had to do was heat something up for me, heat it up. One minute in the microwave and make a cup of tea and she stayed in standing here half an hour and I sat in the toilet waiting for her even to come and find out if I’m alright. She didn’t come;

And I came out, I got up and came out to face something and she said to me, “Oh [her name] your breakfast is made. It’s in the kitchen” and I said, “Can you put it on the table for me please”. And she put it on the table and she gone. That’s not help to me is it;

But what would be better help for you? If you could design the services

If she…

What would you change?

If she come in the… if somebody came in the morning I know she don’t have that long but she can talk to me a bit;

Hm. So apart from doing practical jobs you’d like someone to talk to.

Oh yeah. You can make me feel at home as though I make her feel at home when she came in.

What would you like to chat about? Or talk about?

Not myself but, you know, whatever comes along;

Yeah. And what, what other ways could someone in your situation be helped more? By the services, like health, social services;

Somebody to come and say “Would you like to go out? Would you like to go out?”

What, for a ride in the car or…

A ride, you know, or something. Take you out of the house for half an hour.

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A woman with chronic obstructive pulmonary disease had daily help from social services. Home care assistants helped her to get up in the morning and they returned to help her get to bed at night. However, she commented that in her area social services no longer provided much needed help with housework or with shopping. Personal care was lacking too. She was offered help with showers only twice a week, which in hot weather was insufficient.

Other people, however, were pleasantly surprised by the services available to them, and thought that they were receiving enough support and personal care. A man with prostate cancer was offered Meals at Home Services (was known as Meals on Wheels*). He was also offered help with his cleaning. He also got valuable help and advice from Age UK when he needed a heater in his bathroom.

She is getting enough support and personal care from social services at the moment.

Age at interview 61

Gender Female

Age at diagnosis 57

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Can you tell me what the home care involves?

Yes. Home care. If you think you need home care then you’ve got to get either referred by your doctor or another social worker helpline and they will come out and see you. But I was referred when I came out of hospital after being diagnosed COPD [chronic obstructive pulmonary disease], and I was looked after with what they called Hospital Social Service for 3 weeks and when shed finished with me she referred me over to the social services and said that I needed this care. And so she filled in forms and what I needed, and yes, I’m very lucky;

Personal care is anything from helping you to wash, or bath or shower, washing hair, dressing… If it’s sort of just normal creams then they will put creams on but if its any sort of dressings then of course the district nurse comes in. But that is basically personal care and they look after your bathroom. They just make sure your bathroom is tidy and that your kitchen… the hygiene part of it is clea;

And do you get all these sorts of help?

Yes. And they also will get my breakfast for me because after I’ve personally have had a bath I’m so exhausted. I would have to sit here for an hour before I could really get going and then with the lifestyle that I have I would probably have to go without it so they get my breakfast as well.

Do you get Meals on Wheels [now called Meals at Home]?

No, I don’t because I like cooking for myself. I have a chair that’s out in the kitchen so I can sit and do my vegetables and that. And no I haven’t got to that stage, yet thank goodness.

Do you feel you are getting enough social services support?

For me, at the moment, yes I do.

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He had excellent help from social services and from Age Concern (now Age UK).

Age at interview 75

Gender Male

Age at diagnosis 73

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So I’ve had help from social services who have been very good, excellent. They offered me Meals on Wheels, which I stopped this week because I thought, I was getting a bit too dependent on and so I thought, “No, go back to doing it yourself”;

So I’ve done that, started to do that. And they offered me the chance for someone to come and clean the house which was very kind but I turned them down and when they asked why, because they wanted to keep things right for themselves and I said, “Well there are two reasons. One is I don’t like strangers poking around my belongings and the second reason is they couldn’t do it as well as I can”.

Yes. I was surprised at how much help there is. I mean in some of the BACUP books (now Macmillan Cancer Support) there are lots of organisations that are extremely helpful. Theres a whole list of the people available for whatever cancer people have. And then I wanted a heater put in the bathroom and I thought, “I don’t know any electricians, I wonder who could, I could trust to ask them”. And I suddenly thought, “Age Concern*”, and I rang them up and they were quite superb;

A man came and he advised me that the heater I had in mind wasn’t the right one and suggested something else. He got an electrician to come who brought the heater and fitted it. And then while he was here he came, he looked all roun;

to see if I had smoke alarms and that the place was secure. So that was a great help and I would ask their help again.
* Now known as Age UK

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There are a number of benefits that people can apply for that can help with the cost of providing personal services:

Personal Independence Payment (PIP) is a benefit for people of working age (16-65) with disabilities (or those that are terminally ill) who need help with daily living activities or help getting around, or both. It has replaced Disability Living Allowance (DLA) for anyone making a new claim. PIP isn’t based on National Insurance contributions and isn’t means-tested. You can claim it whether you’re working or not.

Attendance Allowance is tax free and isn’t means tested. It is paid to people over 65, to help with the cost of their care or supervision needs, which should have existed for six months before claiming unless you are terminally ill and then you can apply straight away (under DS 1500 special rules). Any level of Attendance Allowance can increase your entitlement to Pension Credit, Housing and Council Tax Benefits, and health benefits, etc. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you could still qualify for Attendance Allowance.

Disability Living Allowance (DLA) for children is tax free and isn’t means tested. It is for people looking after children under 16 to help with the extra costs of looking after a child who needs supervision or help with their daily or nightly care needs or has mobility problems. They must have had these difficulties for at least 3 months unless they are terminally ill and then you can apply straight away.

(See also our sections on ‘Financial help‘ and ‘Community care‘)

Another man pointed out that social services have a legal obligation to provide certain care. He also suggested that the local minister or vicar might be able to arrange visitors for those who live alone (see also ‘Support and counselling’).

Suggests that a person living alone might find support and friendship through the local vicar or…

Age at interview 70

Gender Male

Age at diagnosis 68

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What thoughts have you got about people who are at the opposite end of that spectrum who haven’t got much support, who are on their own?
Well, first of all, of course I feel very sorry for anyone in that situation but they needn’t be alone. I understand how they feel. Alone, of course they, you do, but they needn’t do that because if they can… if they have the use of a telephone for example and if they have knowledge of who to ring, and as I said earlier the first port of call is the Social Services and there are certain legal obligations in the Social Services, right;

And they should then go to that person, man, female, lady, patient who has rung and they should have a discussion with that person and then they should carry out an assessment and the assessment should be on the needs of that person, not on the illness but the needs that the illness has created and if they do that properly then they will introduce carers;

They will introduce… well it’s called a ‘Package. They will create a Package, but outside of that package, a good person to talk to is the local minister or vicar if you’ve got a good vicar or a good minister. They will arrange visitors. Very important because these visitors that they will be bringing to you aren’t bible clapping visitors, they are nice people who want to befriend you and want to help you, so you can increase your circle but you, if you’re on your own in those circumstances you have to make the moves because they don’t know you exist.

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For more information, see our resources section.

* Meals at Home Services (Meals on Wheels)- Some councils provide meals delivered to your home, if you are eligible. This service varies across the country and you will need to contact your local council to see if they provide this service and whether you are eligible.