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Are you a parent AND have a parent/ older relative in care (or considering care)? Please complete a survey for the CQC - you could win £200 for your favourite health or social care charity NOW CLOSED

(31 Posts)
AngelieMumsnet (MNHQ) Thu 17-Jul-14 15:22:02

We have been asked by the Care Quality Commission to find out the views of the so called "Sandwich Generation" who are in the position of caring for young children as well as older adults who need care.

This survey is open to Mumsnetters and gransnetters living in England, who

- Have or care for a child aged 16 and under (or an older child with a disability) AND

- Have a parent, spouse or older relative currently in a care home, or who has care in their own home, or who currently helps a parent, spouse or older relative as an informal carer AND/OR who is currently considering this sort of care for a parent, spouse or older relative

If this is not you but you know someone who does qualify please do send on the link to them.

For those who are not familiar with the Care Quality Commission, here's some background information from them:

"We are the Care Quality Commission (CQC); the independent regulator of health and adult social care services in England. We make sure health and social care services provide people with safe, effective, compassionate and high quality care and encourage services to improve.

We monitor, inspect and regulate NHS and independent services to make sure they meet fundamental standards of quality and safety. Our aim is to find out whether services are safe, effective, caring, responsive and well-led . Through the information we provide, we help people make informed choices about their care. We publish our inspection reports online at www.cqc.org.uk. We are introducing ratings from this autumn so the public will know how the services they use are rated; outstanding, good, requiring improvement or inadequate."

Everyone who completes the survey will be entered into a prize draw, where one MNer or gransnetter will receive a £200 donation to the health or social care charity of their choice.

If you're interested, here's the survey: https://www.surveymonkey.com/s/3CPFBP7

Thanks & good luck,
MNHQ

CornflakeMum Thu 17-Jul-14 18:39:37

I am getting a message that the link is broken/unavailable?

AnnMumsnet (MNHQ) Thu 17-Jul-14 20:49:07

Should work cornflakemum. Maybe SM was down when you tried?

I don't qualify for this but I hope it gets plenty of responses

Blessedandgrateful Sat 19-Jul-14 23:57:42

Have done smile

Much needed survey.

It's a pity they don't allow the survey to be answered for those of us accessing residential services for their children because if you think it's stressful for an adult believe me it's way more stressful for a child (although I know, as I have recently had to put in complaints & pull my son out of a provision that Ofsted rather than the CQC are responsible for children's services now - I think this is a mistake btw & does the children using these services an injustice).

Anyway I gave up on the survey because my older relative is receiving very good home care whereas my severely disabled son is now receiving bugger all - although officially he's still accessing residential services - but the stress is associated with sorting out his care rather than the older relative's smooth running home care. So it really doesn't begin to reflect our situation.

Floralnomad Sun 20-Jul-14 14:10:02

I've filled it in but TBH I don't think its a very good survey and most of it was irrelevant to my situation.

cricketpitch Sun 20-Jul-14 16:41:22

I filled it out. It asked some questions but the field was very narrow. It seemed to be mainly about the monitoring of care homes which fits in with the governments announcement of their "special measures" initiative.

The real difficulty that I have found with my mother being in the early stages of dementia is that without her agreement I am very often not allowed to be involved even though we have a diagnosis. If she thinks that she is fine and everyone else is mad there is little I can do.

Secondly there are so many agencies involved - hospitals, (who discharge elderly confused patients to go home alone), GPs who simply prescribe, Social Services, Memory Clinics etc - and they don't communicate with each other.

Appointments are "allocated" with no understanding of my other commitments, (carers at this stage don't usually live locally).

We need a central place to handle this

offtoseethewizard64 Sun 20-Jul-14 21:28:42

Have completed it, but it doesn't really address some of the major issues that affect the sandwich generation outside of the 'care industry'.

I live over an hour away from my mother but am still caring for her as well as caring for my disabled DD. She has homecare for certain things, but problems arise which are outside the remit of care agency and she has to wait until either I or one of my siblings can get to her. She recently broke her false teeth and was unable to eat properly. This has been a nightmare to sort from a distance (siblings also an hour away). Also DM will ring GP and GP will prescribe over the phone but we cannot collect prescription and although the pharmacy deliver her regular meds they often 'forget' to deliver a one-off such as antibiotics.

offtoseethewizard64 Sun 20-Jul-14 21:36:41

cricketpitch I agree with a couple of your points too. DM was discharged from hospital to an empty house in Feb and although the care package was ready to go - no one actually made the phone call to implement it when she was discharged. This was only discovered after Social Care had gone home and the ward tried to deny any responsibility for the error.

Also re appointments - DM gets appointments for 9.30am. I cant leave home until DD has gone to school at 8.30 so earliest appt would need to be 10.30. DM rings up and says she can't make the appt and they just send another one for similar time (her fault i know but she is old), DM will not use hospital transport as she has heard stories of people being abandoned in the hospital waiting room for hours waiting to be taken home.

ProfessorDent Mon 21-Jul-14 16:12:29

I hope the new reforms to the CQC give it some much-needed teeth because currently it's pretty useless and in fact deliberately misleading in its reviews, in particular in the way it gives the impression it's the main port of call when you have complaints about treatment of a relative. Mind you, you'd hesitate to go to social services or the Local Ombudsman either. All you get with the former is a safeguarding meeting with the care home aka a bit of a talking to, not sure about the Ombudsman, but as the care home will guess it's you that's making a complaint, you can't really fancy your chances of your loved one not getting it in the neck as a consequence.

AnnMumsnet (MNHQ) Mon 21-Jul-14 16:39:18

All these comments will be read by CQC so please do post them on the thread.
It's a massive issue we know and there's only a certain amount of questions we can have on the survey, but other points on this thread, will, as I said, be read.

ProfessorDent Tue 22-Jul-14 10:58:24

I have filled out the survey, it is addresses several points that need looking at. That said, I do not have kids, but filled it in anyway (not everyone on Mumsnet is a parent, it's open to all), hope that is okay.

I suggest you post on other websites too, maybe MoneySaving Expert.com

Funnily enough, they never mention the cost in the survey, I mean it's generally over a thousand pounds a week in the South East!

Treadmillmom Tue 22-Jul-14 15:50:37

I have completed the survey but none of the questions really pointed to this ‘sandwich generation’ issue.

My mother has been in a care home for 14 months after being cared for by my brother for 3 years.

I work full time and have 3 primary aged children and live one hour’s drive away.

When I visit my mother I want us to enjoy each other’s company or go out with the kids but I constantly face a barrage of complaints from my mother regarding failings in the care she is receiving.

Fortunately she is of sound mind, just physically limited.

My siblings and I are forced to intervene in the level of our mothers care.  It’s utterly exhausting and soul destroying and makes my mother frustrated and angry, which she often takes out on us.

A recent event was the straw that broke all of our backs.

I looked at the Quality Care Commission website that advised I complain in writing to the local authority, which I did.

The local authority speedily replied in writing that this was a ‘serious safeguarding issue’ and Social Services would be in touch.

Social Services have got in touch and told me I MUST put my concerns in writing to the care home, the local authority compliance and the social worker.

What a load of rubbish!

Like I haven’t got enough to contend with.

Like the nursing home don’t already know we feel, we had a 2 hour meeting with them a week ago and a review 2 weeks before that!

Stalling for time I call it.  Hoping the dust may lie.  Give the care home enough time to sort their alibi.  Give the care home the opportunity to treat my mom like a princess just in time for a review where she’ll sing their praises.

I am so, so angry.

There are many dementia patients in this residence and after my own personal experience God only knows what failings the home are getting away with because these unfortunate individuals do not have the capacity to inform their loved ones.

telsa Tue 22-Jul-14 21:53:36

Wasn't exactly sure how to classify DM who is in sheltered housing - so fairly independent living, but with a warden in working hours and an emergency line. pretty good set up for thems that can, actually.

ProfessorDent Wed 23-Jul-14 15:09:53

Oh, I totally agree treadmill mom. Currently I have to alternate between my sister in visiting the nursing home to get 500ml to a litre of drink down my mum, otherwise it doesn't happen. It is not sustainable, but we have to step in, we have no leverage.

The last nursing home nearly killed my mother, gave her severe liver damage. CQC is rubbish, while complaining to social services is dodgy as the home will know its you, it is a bit like your boyfriend going round to sort out your boss because he has been mean to you that day - like, how is that going to help? The last home is undergoing 'safeguarding' over the number of complaints from relatives, this translates as 'a stern talking to'. No sign of anything punitive, and on the CQC website for the last eight months !! there has been a discreet two-line message saying 'We are looking into this care home following information received' - it is as if they are loath to actually post a bad review!!

Evilwater Thu 24-Jul-14 10:46:11

Filled in mumsnet.
I work as a healthcare worker in the regional hospital, and for me it is a mine field. I dread the day when nana (I'm 29 and have a 1 year old) has to go into a home. That right DREAD!
She has home care now, which is ok. We have to companies come in, the morning lot are need more training, and we haven't a review with them for ages. The second lot are wonderful but they are always stretched for time.
I could go on for ages, but I have to pick up my LO (PFB).

I'd love to have a chat with one of these CQC guys. Oh, the stories I could tell.

MommyVan Tue 29-Jul-14 20:20:46

Filled in the survey too but agree with other posters that it doesn't address some of the real issues.

My mother has dementia and has been in a care home for 5 years. This is an excellent facility and she is very settled. However remove her from this environment, eg for a routine hospital appointment (unconnected to the dementia) and all hell breaks loose. She had a suspected broken hip recently, I arrived (from 3hrs away) to find her sitting up in bed hugging her knees. Clear no broken bones. Hospital ward not equipped for dementia/elderly care, mum had soiled herself and was "resisting" X-ray and other examinations - well, what a shocker, she has advanced dementia and doesn't understand what's going on!

Eventually X-Ray took place in my presence and she was discharged the following morning. But there was simply no need for this prolonged stay in hospital - found medical staff just don't listen and want to follow the "normal" protocols but can't actually deal with having a dementia patient in their care. Mum would have been off out the ward if I hadn't been there.

Sorry that was a bit of an epic... But a lot more needs to be done to improve the quality of care for our elderly population, and therefore reduce the pressure on us.

Pinkje Tue 29-Jul-14 20:31:08

I know it says in the opening post, but can you confirm it's just responses from people living in England. Is that because Scotland has it's own health system? Just interested, not wanting to start a debate.

snoggle Thu 31-Jul-14 08:17:07

It's so difficult to find appropriate care for dementia patients. The short list of places that will accept SS funded patients is very short, and then there aren't enough places.

Some homes we looked at I wouldn't put an animal in, despite CQC. Reports being ok - they would have been a death sentence for my dad as they were effectively prisons. Their website talked about activities and stimulation but in reality the residents were locked up on the 1st floor with nothing to do but TV. So important for dementia sufferers to mantain interests but we saw little providi

snoggle Thu 31-Jul-14 08:18:33

It's so difficult to find appropriate care for dementia patients. The short list of places that will accept SS funded patients is very short, and then there aren't enough places.

Some homes we looked at I wouldn't put an animal in, despite CQC. Reports being oko you think that sustainability of fish is important? Do you consciously choose sustainable fish when you do your shop or are other factors such as price more important to you? Does the country of origin of your fish matter to you? Do you have any top tips for Mumsnetters when buying seafood responsibly? - they would have been a death sentence for my dad as they were effectively prisons. Their website talked about activities and stimulation but in reality the residents were locked up on the 1st floor with nothing to do but TV. So important for dementia sufferers to mantain interests and independence but we saw little provision for this in many places and CQC reports don't pick it up

Jux Thu 31-Jul-14 17:46:31

I'm not eligible I don't think. We are parents and MIL is very demented, living at her home 150 miles from us, with step-FIL who is in denial. It took dh (us) a long time remonstrating with sFIL, talking to Adult Services over hte phone, and running back and forth, to get her any care at all. She had been like a bag lady as sFIL refused to do anything which could be remotely described as "women's work" (his words), so the place was filthy, MIL was filthy and undernourished, she was wearing filthy clothes with holes in because the bastard dear old man wouldn't lay out fresh clothes for her, never ran a bath for her or cooked or helped her eat. Sherry and biscuits is what she got for months.

Adult services couldn't do anything without his permission and he wouldn't let them in; when eventually he did, he wouldn't fill out a financial form (far too rich to qualify for help anyway). When care was sorted for her he was rude and obstructive resulting in some refusing to come back.

A year ago we thought it was sorted. 6 months ago he sacked everyone. We are in despair over it all. I know in extreme cases Care agencies can just step in, the police can be involved etc., but apparently it's not that bad yet. Yet, fgs.

MontysMum22 Fri 01-Aug-14 00:37:14

I don't actually qualify for this and that's a shame because I have been through this whole scenario with both my parents and my husbands parents whilst my children were all little. My eldest was 5 and my 2nd only 2 when my father died leaving my Mother basically to my care when thing went wrong over the next 18 years during which time I had daughter number 3. Then a few years later my husbands father died and then we had two older ladies depending on us one actually living with us. Practically all the time I was bringing up my children I was also juggling being the main carer for two Mums both diabetics with heart and other conditions. My mother alone had 5 heart attacks, pneumonia, cellulitis, and auto immune hepatitus each which required lengthy hospital stays followed by respite care and even daily homecare and hospice care. finally making a permanent move the last 3 months of her life to a nursing care home. My mother in law suffered in a similar vein. This was all whilst bringing up three young children, a time when we should have liked the assistance of parents helping us! You name it we've been through it all complaints procedures for poor care the lot. I cannot understand why the survey was only for parents who are currently experiencing these things or about to. In excluding those of us that have already been through this trauma and have come out the other side you've actually excluded the most experienced of us with the greatest wealth of knowledge on the subect

damepeanutbutter Mon 04-Aug-14 08:18:38

Having read a couple of CQC reports they seem to me to be inadequate and not detailed enough. Ofsted has such a hold over schools because their reports really do cover everything. And as a parent we are asked to complete surveys whenever there is an Ofsted report so that Ofsted gets an idea of how much support the school has from the parent body. Everything is anonymous. Also, Ofsted talks to a number of those responsible for the children (ie the parents). If CQC talked to a range of either residents, or to close family of residents, they would get a much better idea of how the care home is working.

My mum is in a very good care home. However, it is not perfect. Retention of care staff, particularly in the dementia wing, is not strong. And I wonder why? Once the care industry management understands that the care staff need to be supported and valued so that they show compassion and respect to our relatives then things will get better. CQC should delve much deeper into how long carers stay in place. The longer the good ones stay the better the care home must be IMHO.

From my experience 'care' is an operational requirement, whereas 'compassion' should be a compulsory personality trait of every carer. If the care industry could move more to becoming compassionate by employing compassionate people and having a compassionate ethos then the level of care for elderly and vulnerable people would increase exponentially.

3littlefrogs Mon 04-Aug-14 15:54:57

My parents have passed away now, but I am still caring for 1 elderly relative and the other is in a dementia unit.

I am a nurse (nearly 40 years experience). The biggest failing I see in care homes (i.e. those that are not nursing homes) is the lack of a qualified nurse anywhere.

IME old people get dehydrated and develop pressure sores in care homes because nobody on the premises understands the importance of pressure area care or regular drinks. The bar is set extremely high for actual nursing care, so it is perfectly possible to be blind, confined to a wheelchair, have a catheter/colostomy/ileostomy and not be assessed as needing any "nursing care". However well intentioned the staff may be - and some are, some aren't - they are not trained in managing these conditions. IME with my parents problems were left to become serious and dangerous before a district nurse or GP was asked to give advice.

If the manager in a care home does not understand the need to check that an indwelling catheter is not blocked, or that a blind person needs assistance with drinks and food, or that sitting in a wheelchair for 8 hours at a time is not a good thing in terms of pressure sores, what hope is there for teaching and training care staff?

I have witnessed carers wearing gloves to change and wash patients who are incontinent, then pour drinks, open and close doors and windows, rearrange personal belongings on bedside tables - all still wearing the same gloves. What does the CQC do about this sort of thing? Nothing.

I won't even begin to talk about the lost clothes, shoes, false teeth, spectacles, hearing aids etc.

If you have a relative in a care home it costs upwards of £700 -£900 per week and you still have to be there on a daily basis just to make sure your relative has food, drink, medication and that their property hasn't all disappeared. This has been my experience of half a dozen different places. The fees certainly don't go towards wages or training.

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