/ Health

What are your experiences of arranging care for a loved one?

Elderly couple in care home

A father and daughter are sobbing in the kitchen, exhausted by their attempts to arrange care and support for their much-loved wife and mother. If this sounds like an episode from your favourite soap, it isn’t.

This is real life in 2014, and it’s just one of the heart-breaking testimonies we read when we asked thirty people to keep a detailed diary as they struggled to negotiate a maze of confusing advice and information while arranging care and support for another person or themselves.

Two years ago we investigated the quality of care provided to people in their own homes and in care homes. Now we wanted to look into how easy or difficult that care – and information about it – is to find.

Our extensive research – including survey work and additional interviews with families who had arranged care – has uncovered problems including people being sent from ‘pillar to post’ to get support and information and families in distress and having to complain to get things moving.

You might think that those with the most money (‘self-funders’) would get better advice, but surprisingly the opposite is often true. Some diarists were wrongly told they could not get council support to help them assess their needs. Robert H, trying to get care for his parents in their 90s, wrote that he had to go into battle with the county council ‘to get even the most basic service [an assessment] that they say they offer and which I believe they are obliged by law to deliver.’

Documenting your experience of care

Getting good advice is key to making the best choices. Once Tricia A had the right information after a less than helpful response from a council ‘specialist’, she found a very suitable service that could offer her father respite right on her doorstep. She told us:

‘I had no idea that there was an option like this. This means that I can potentially go for hospital appointments myself… without worry!’

So what will it take for things to change? The Care Bill currently going through Parliament in England promises a better local authority deal on information and advice for everyone including ‘self-funders’. Local authorities will have duties to provide information and advice about care to everyone in their local area who needs it, and that includes family carers.

We think councils must be held to account for their information and advice delivery, so it really meets people’s needs. We’ve fed back our views to the Government. We also know that people ‘cope’ without support for long periods, but do see their GPs. Therefore, GPs need to be better linked to social services so people get referred for good advice before reaching breaking point.



To a certain extent we have ourselves to blame, in as much as we have coped and not gone looking for help. However, it is a fact that with the current financial climate, we have to do the looking. No one is going to come knocking on our door to see if everything is o.k. The doctors are good with health issues but their help does not extend beyond this remit. Again, we have not gone looking for luncheon clubs and day centres, which in our area don’t advertise themselves. There would probably be more hastle getting ready for these, on time, than sticking with the routine at home. It is possible to get people to call for specific tasks and we have a lady who will home sit for a few hours in the week. No private or public service is available to allow us to take a day off and we are not helping ourselves by refusing to consider a short stay in a care home every so often. We feel that this would be traumatic and cruel, even though we could justify doing so. The family has coped so far but both of the carers have given up the prospects of an exciting retirement to do this for the last eight years. So, we don’t bother them and they have forgotten about us. I dare say this is the case with many families. We do need help, but haven’t properly focussed on what that should be. Since it isn’t that obvious where to turn to get it, life carries on with no plan B as a back up. This is a very public forum and you will note that my comments are non-specific. I enter these remarks to join this conversation and not as a cri-de-coeur.

Lessismore says:
23 August 2014

I agree that it is difficult to find the info about things like Luncheon Clubs. I have found that Age UK was good with finding help when we needed someone to help a sight-impaired relation negotiate a hospital to visit a partner. They found a volunteer from the British Legion. This allowed for more regular visits than we could achieve as we live more than a 2 hr drive away. Taxi drivers too can be brilliant as it was a case of not just dropping off but taking to bedside and collecting from bedside. So although taxis are more expensive than taking the bus or train a good rapport with a firm or a driver is worth the expense. Attendance allowance (which many don’t know about) can help to pay for this.

We also had a neighbour who was absolutely brilliant and came for an afternoon a week. It was difficult at first knowing what to do with the time off as it was such a shock. As has been noted above our own dentist appointments and hospital appointments became very difficult and tiring to deal with when we had to organise everything to be OK at home too. How we will be expected to work for another seven years and do this in future I do not know and hate to think about. The job went as it was impossible to concentrate on work and being in several places at the same time.

What I have learnt is that if something has happened to me then I won’t be the only one… Without having a forum or group to discuss it no-one will ever know and it will be difficult to counter the accusation of you being the problem because no-one else has complained so therefore there isn’t a problem. There is… a big and growing one.

Are we waiting for a built-in obsolescence chip?

While I can’t say a lot about this matter I have, in the past, done some undercover work in care homes. Both working in them and taking my family along to try and make out I was was looking to put my mother in one.

I had to stop doing this type of Mystery Shopping work in 2012. But it really did open my eyes so much and it did take many hours to try and work out all the paper-work they gave us.

Gerald says:
5 August 2014

Dear Lee

All rather clandestine if you ask me, you have obviously been given loads of info, why don’t you share some of it to give others some guidance otherwise it all seems a complete waste of everyones time


Legally I can not speak about most of what i do for a living. Some stuff I can, but health / NHS etc i can’t. I report back to my boss and that’s the only person I can speak to.

While I have stopped doing this kind of work & moved into the retail side of the work more, I have kept with the same company & can not risk my job.


Gerald says:
5 August 2014

I have never heard of any organisations doing undercover work at Care Homes particularly the NHS related , is this legal I wonder??

Ha it’s fully legal Gerald, I have done all kinds of Mystery Shopping work since I was 16 with a cigarette company, that’s how i started doing this kind of work & really enjoy it & helping organizations improve.

Gerald says:
5 August 2014

Dear Lee,
It would be interesting to know how this helped Care Homes improve ? if your reports are never published or discussed ?

My report goes to my boss, my boss gives it to the people higher up and they use these reports from people like me to improve the care homes. Sometimes we are wearing a secret camera, and this film is used too. Sometimes we don’t & just fill paper/online reports in.

100’s of these are done each year and it helps them improve, sometimes we are sent to bad care homes, sometimes good ones. But when we do one we can’t speak about what he find, it’s private, it’s just part of the system they use to check-up on the staff.

But my boss always says to me when i get a new job “Go in there and find problems, as many as you can” as that is what helps them improve. I also use this in other feedback I leave companies too, companies that are nothing to-do with work.

Gerald says:
8 August 2014

Hi Lee,

I get it. the Company you work for works for the Care Home owners to check out their staff I soppose that is better than waiting for Panorama to do it. Would you say that Programs like Pano are showing a realistic picturem it seems hard to tell from the tv program