Research into carers needs and wants?

All about caring
1

Hello,

As well as being a carer (actually I tend to use the description parent , but that’s perhaps a discussion for another time) I am looking to take on a role with my local authority helping to shape (to small degree) policy towards supporting carers.

I am trying to find if there is any published research into what it is that carers most want in terms of Information, Support and maybe training I’m sure we have each got our own list of most wants, but what I’m looking for is something more widespread in terms of research across a broad population.

Although there is a lot of information of various types out there (including CarersUK’s own State of Caring Report 2018) but I am struggling to find much that relates to needs for information, support and training.

Is anyone aware of such research?

Grateful for any information you may have.

2

I applaud you for doing this. Please look globally- not that i have anything to offer at present.

I would think that interpretation of what the laws mean to the specific individual would be important.

3

Hi Tony … Information / Support / Training.

Information … as a general backgound :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/information-vital-but-what-if-you-don-t-have-internet-access-go-without-34379?p=388277#p388277

Identifying carers … a problem that nobody has tackled in 40+ years.

https://www.carersuk.org/forum/news-and-campaigns/latest-caring-news/identifying-family-carers-a-priority-or-a-victim-of-necessity-27921?hilit=identifying%20carers

2 ends of the spectrum … senior citizens " In sickness and heath " … do not see themselves as carers.

Child Carers ?

https://www.carersuk.org/forum/support-and-advice/young-adult-carers/young-carers-not-getting-support-probably-the-second-best-understatement-so-far-this-year-36280?hilit=child%20carers
https://www.carersuk.org/forum/specific-disabilities-conditions/other-specific-conditions-and-disabilities/special-needs-funding-for-children-perhaps-a-whip-round-would-raise-more-than-send-34766?hilit=child%20carers

Support and training :

Subject to the underlying problem of identifying careers locally . how can ANY LA create a policy … a policy for whom exactly ?

Plenty of local examples available simply by an Internet search : LOCAL SUPPORT SCHEMES FOR FAMILY CARERS.

CUK annual survey mentioned … our views on that one are well known …around 1 in 1,000 respond … replies geared towards
those with Internet access.

( 100,000 famly / kinship carers used a foodbank for the year ended 31 December 2017 … NOTHING in the survey on this ? )

To help carers in the caring role and / or juggle work with caring ?

And … at what price ?

3.9 million family / kinship carers are surviving below / at / close to the Official Poverty Line.

For them … eat / heat / roof … quite a feat if all three are secured on a weekly basis ?

Training ?

Many on here will argue that they themselves tend to train those who are sent to train them !

In our world … CarerLand … we look apon ourselves as the professionals.

Perhaps all new recruits should be assigned to a variety of us before they are let lose on the general public … suits as well as
the paid care worker diminishings corps ???

Plenty more … just stratching the surface so that you can , eventually , frame the REAL questions.

Bearing in mnd that most LAs are now close to breakdown ?

( Carers Assessments ? What is the real point of these creations if everything mentioned above is not acted apon … and a price a carer can afford ??? )

One final thought … a fundamental one … carer / caree … a partnership … no caree , no carer.

Future policies to be governed by that important aspect ?

4

You might find some relevant papers on the US PubMed website.

It’s vast, highly technical database of published medical research worldwide. You might need to experiment with your choice of key words! Good luck!

Also look at webmd.com.

5

Thanks very much Rosemary_1706.

I had not specifically limited my searches to UK only material, but perhaps “Professor Google” chose to judge what it thought I wanted to see. I will though cast my net wider and follow up the leads you have suggested - much appreciated.

Can I ask one further question? In your first response you referred to “interpretation of what the laws mean to the specific individual” - what did you have in mind there? Was it to understand what support the individual is legally entitled too (which does seem to be quite a thorny issue)? Or did you have something else in mind?

Also thanks to Chris From The Gulag (love the avatar btw) some very interesting links there - I think they go beyond anything I can dream of having the scope to influence anytime soon , but all information is valuable nonetheless.

Anyone else with any thoughts?

6

Your welcome , Tony.
( Mainly aimed at those responsible for LA policy. If they get it wrong , it will fail all the way down the line. )

A scatter gun … or laser beam … type policy.

Unless one can identify what carers need from a LA , and plan accordingly , valuable resources will be wasted.

Rich / poor manor ?

Very relevant.
__

Despite rising poverty, spending on disadvantaged families in the poorest 20% of English councils – mainly Labour-controlled - reduced by £278m in 2016-17 after successive years of cuts to central government grants.

By contrast the wealthiest 20% of areas, predominantly Tory-controlled and in the south-east, which were less affected by cuts to deprivation grant funding, were spending £55m more on services for poorer families by 2016-17.

“To the extent that there have been cuts in spending on disadvantage, they have happened almost exclusively in the most deprived areas of England,” the study, funded by the Lloyds Bank Foundation charity, concludes.

Don’t lose sight of the Care Act , 2014 , most LAs are driving a coach and horses through it , many carers out there are still
unaware of it … and the statutory obligations placed apon the LAs to carry out it’s provisions.

Carers Assessments … " A reasonable time " … some interpret as one month … how many months in your LA ?

Bottom line ?

LA services … fit into the local commumities needs or … fit the local community into the LA’s policy ???

If you don’t ask carers what they need , how do you know what they want ???

And … full circle … how do you ask carers on your manor when the vast majority are unidentified ???
( Minimum wage rises shortly. Unless YOUR LA increases direct payments , all receiving them will receive less care for same monies ??? )

7

Yes Tony, i think that is what I had in mind!

8

Tony,
I really didn’t like you equating parenthood to caring in your first post. Does your child have special needs, i.e. a physical or mental handicap?

9

Hi bowlingbun,

Yes my son has physical, medical and educational special needs.

I didn’t intend my comment to be particularly controversial, but its simply that personally I don’t automatically associated myself with being a carer as opposed to a parent (even though it is patently true). So if someone announced that they were doing something to support carers it wouldn’t automatically think that had anything to do with me.

There are others in my ‘network’ that are probably quite similar in that respect.

My son is 11 now and whilst we are engaged with a number of groups (mostly by not exclusively local) that support my son, this is the first time that I had thought to connect with a network that supports carers.

I don’t know if that makes me a ‘hidden carer’ or not, but I’m probably part of a group that may present challenges in getting messages out there.

I hope that makes sense.

10

Hi Tony, thanks for the explanation, of course you are a carer.

I can’t remember the exact wording, but the definition is around doing something for someone else have a significant effect on your own life. I expect someone will come up with the exact wording presently.

In Hampshire, where I live, there is a support group for parent carers, which started up just as my son (now 40) left Education. Have you asked Social Services if there is one where you live?