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in thinking that we'd do better to support families financially to care for loved ones rather than give money to the Panorama type "hospitals"; where abuse reigns?

(19 Posts)
DillyDaydreaming Sun 05-Jun-11 11:15:49

Well am I?

I know we will always need some kind of system in place BUT find it quite ironic that the hospital featured in the Panorama programme is funded by the same council which denied a known MNer extra respite care for her daughter. Yet they are/were happy to pay £3.5k a week for institutional abuse and neglect.

Surely it would make more sense to support the families to buy in the care they want for their loved ones rather than take the loved ones away forcible (as we learned happens by watching Panorama)

The Government appear to have reacted to the show in a knee jerk response - "more unannounced inspections", "the residents have been moved" etc etc. They would do better looking at the system which allowed this to occur in the first place and ask how they reform it. No instead they dick about with DLA and seek to deny families the pitiful amount of support they currently receive.

Am off out now so will check back later.

TheProvincialLady Sun 05-Jun-11 11:19:34

Abuse happens in the home too. I know of two young disabled women who are being emotionally and financially abused in their own home. I don't know if there is/has been physical abuse but would not be surprised.

Vulnerable people are just that - vulnerable. Just giving more money to families will not solve the problem. But yes, something needs to be done to ensure that vulnerable people of all kinds are treated with respect and compassion, wherever they are.

activate Sun 05-Jun-11 11:20:19

I think you are because the burden of care is immense and it would be there generationally - so whilst you may be caring for young children you may also have parents to care for - is money going to help you in the circumstances where you are stretched to breaking point?

We need good quality respite care, we need good quality day carers who can be on tap and we need good quality care homes

we have none

we need to go back to our inter-generational family and community living for care in the home to truly work - there needs to be extended families in your street

so I wish there were an answer - I wish it were as simple as money (although no doubt a huge amount of cash resource would be extremely beneficial) but it would not be enough

DillyDaydreaming Sun 05-Jun-11 13:12:43

I take your point activate. I was thinking more of there being a system in place but supporting families who wanted to provide care themselves.

Sadly I am aware that abuse occurs in the home, have dealt with it in elderly care.

I suppose I am being unreasonable (or at the least - too black and white). I just think that the balance is all wrong and that while these establishments can command AND get huge sums for care, families who generally provide fantastic care and support with very little help, are struggling and being denied extra input when they really need it.

ada07 Sun 05-Jun-11 14:56:46

I think that it's important to remember that the facility featured in the Panorama programme is a hospital staffed by nurses and other HCP. The vast majority of people with LD do not need to be in hospital which is why the dreadful 'mental handicap hospitals' were closed in the 60's and 70's. In addition to the abuse scandals in those hospitals.

It was difficult to see what medical, psychological or behavioural treatment, if any, was being provided to the patients at Winterbourne Hospital. Hospitals should not be providing social care or respite care and therefore not be in financial competition with support for families at home.

Punkatheart Sun 05-Jun-11 15:02:37

Caring at home can be horrendous. My mother cared for my paraplegic father and it is not too dramatic to say that it nearly killed her. Some people are simply not equipped emotionally and physically to do the job. I have just arranged care for an elderly friend and I was shocked how much per hour they charged to come in for a few hours every day. She wanted to try a cheaper company and sadly they kept letting her down. So now she is paying a huge sum of money for someone to come in and make lunch and wash her.

The government bangs on about carers at home and how much they save the country but yes, they don't support those people.

It is all wrong but there are no simple solutions....

TheFlyingOnion Sun 05-Jun-11 15:05:01

OP not all families are physically or mentally able to take on the care of their disabled family members.

You seem to be imagining a situation where a child is cared for in the home by parents, but what happens when that child becomes an adult? Do they stay at home? What if the parent's become ill or die? Who looks after the disabled person then?

IME the best way to ensure that disabled people are cared for for their whole lives is to house them in small homes in the community. Other community members, even the lady at the corner shop, see the disabled service users every day and as such the community acts as a check. Added to this should be frequent unannounced inspections and a decent rate of pay so that you attract a high quality of care assistant.

Shutting disabled people away from the community in a long stay hospital removes those people from society. Society benefits from having all sorts as its members, including disabled people. The disabled people also have happier, fulfilled lives as active members of the community.

So, yanbu to want to find an alternative to long stay hospitals. However, this alternative must take into account that the family may not want to/may be unable to care for the person, and that person might actually be better off outside the family environment. Disabled adults should certainly not be expected to live with their families until their parents die or can no longer cope.

cory Sun 05-Jun-11 16:45:15

I thought for a while that we might have to care for disabled MIL and had got to the stage where I sat down and thought of the implications:

ruining our house and probably making it unsaleable in the future by knocking down walls to make room for MILs wheelchair, hoist etc, making hole in ceiling to install lift

having two teen dcs of different sexes sleep in a room with just about room for one double bed and nothing more

investing in horrendously expensive hoist for MIL's use only (the cost of her current one in nursery home is spread over 20 odd people)

getting training for using said hoist

paying someone to be on call to come in whenever MIL needed the loo/a wash/to get out of bed/into bed as she is too heavy for one person to manage her on the hoist

giving up my job to stay with MIL at all time

if she fell, ringing an ambulance and leaving her on the floor as there is no way I could lift her

engaging someone to look after my own children/take them to hospital appointments/the dentist/school etc etc as MIL could not be left alone in the house

letting dh do all the shopping etc as I could not leave the house

it is a lot cheaper to provide for MIL in a nursing home where the costs for equipment can be spread over several people- and she can get far higher quality nursing

The truth is that if MIL had been cared for on oldfashioned inter-generational lines she would be dead by now, probably from bedsores. Old bedridden people did die in those days under circumstances that would certainly call for a Panorama investigation today.

DillyDaydreaming Sun 05-Jun-11 16:49:37

Good point TheFlyingOnion - small community houses would be far better.

Okay so what about making sure that relatives had a REAL voice in the building and staffing of these homes

... and yes - in my OP I was thinking far more about families with younger people and children having more money to buy in decent care and support. I think what also struck me in the Panorama programme was that some families would have been happy to care for and support their relative at home but that the decision had been taken away from them.

I have not worded my OP that well (was in a rush) but yes, I realise we will always need a system of some kind to support vulnerable adults who need care.

I just think the system is so weighted in favour of care institutions like this and it's big money. Just a little bit of that money supporting families would be well spent.

DillyDaydreaming Sun 05-Jun-11 16:54:11

I think cory that your situation is understandable and indeed not all families can support relatives. My grandmother is in a fantastic nursing home where the care is excellent and the needs of residents are paramount. It's a small community based nursing home and that's the real issue - why should we be supporting care establishments (and I use the word "care" loosely) like the one featured on Panorama when clearly better care and facilities exist.

TheFlyingOnion Sun 05-Jun-11 16:55:49

dilly there aren't many "institutions" like this these days and most children are supported in the home. I agree that families should be supported all the way to ensure that the impact on the whole family of the disability should be minimised.

If a child cannot be kept within the family then a foster or respite family should be considered so that the child still benefits from a family setting.

And in an ideal world all relatives would have more of a voice and have the best interests of their children at heart. Unfortunately some relatives simply don't have the wherewithall to push for the best care for their child, if we are talking about children.

The system has to be in place for all children to get the support they need without the relatives having to raise merry hell about it. I just don't think this is going to happen. It never has. There is simply not the time nor the resources...

TheFlyingOnion Sun 05-Jun-11 16:57:32

exactly dilly, we should not be supporting such care facilities, where no medical care is given, and they are simply a "holding area". No-one should have to be treated like that.

MetalJacket Sun 05-Jun-11 17:01:27

YABU. The Panorama programme was shocking, but that doesn't mean all of these institutions are abusive and some of them offer very high quality care. My niece has SLD and autism and my sister fought hard for her, firstly to be placed in a residential school and now in a residential college for adults. Both of them cost about as much as the Winterview home and initially the council refused to send her there and said that she should go to a local school which all of her therapists and other professionals said was completely inadequate.

She has learnt an enormous amount at school in terms of life skills and social skills, but she will never be totally independent and even a supported living place in the community wouldn't be an option for her.

I have visited her at college, which is tucked away in a rural location but I don't see it as being shut away, but rather allowing them the space to grow without the judgement of the world at large. There is a whole community on site, where everyone is accepting and they can feel safe. They spend some time in the community but it is heavily supervised. Most residents progress on to a residential home rather than independent living.

It's nice to think that it would be better to have disabled people living fulfilling lives in the community, but the truth is that there are some terrible stories about disabled adults being bullied in their own homes - here's just one example. My worry is that councils will just respond to this by using it as an excuse to remove funding for placements where people with disabilities are actually happy and thriving.

TheFlyingOnion Sun 05-Jun-11 17:06:22

but metaljacket a college is completely different from a long stay hospital.

In a college the disabled person will be learning life skills from well qualified carers, taken out into the community (even in a rural location), entertained and educated.

They are not simply left in the institution to spend their days staring at the wall.

You cannot compare the two. I am completely in favour of both residential schools and colleges as providing essential education in a high-quality setting.

Supported living in the community is an option for all levels of disability - even ones requiring 24 hour complete care. It is not the case that most students go from residential college into long term care "institutions", they can frequently be housed in small community settings with all the care they need.

Glitterknickaz Sun 05-Jun-11 17:11:19

I have recently heard of a scheme in my town where they are building a development with five flats with attached warden flat for young adults with learning disabilities. They'll be able to be independent to a degree but they will have someone on site for when they are unable to cope.

Think it's a great concept, just hope it works out.

TheFlyingOnion Sun 05-Jun-11 17:17:10

sounds brilliant glitter, I just wish it happened more often.

MetalJacket Sun 05-Jun-11 23:15:18

TheFlyingOnion, DN will almost definitely be going to a long term institution once she leaves and my sister believes it is the best option for her (and I think she is best placed to decide as the parent). Nearly all of the students from her college progress on to such places as they have such a high level of needs, my sister has spoken to a lot of parents whose children have already left and has started visiting places. Some are described as hospitals and others as care homes. They are run by private companies which specialises in care for adults with disabilities, like the one in the programme (well, was supposed to care for them).

I haven't visited them myself but the residents in these hospitals aren't left staring at the wall. They do continue to learn, be taken out in the community, do adult education classes, have therapy, use leisure facilities on site and have full medical care on site. Just because that particular hospital shown wasn't providing these opportunities to its patients, it doesn't mean that it's the same situation across all settings.

fuzzypicklehead Mon 06-Jun-11 01:23:38

OP, the system you describe where disabled individuals and their families recieve their benefits directly and use it to purchase the services they want is already becoming the norm. As of April this year, the government mandates a minimum of 30% of people with learning disabilities must be able to access self-directed support. Independent brokerage networks are developing accross the nation to help support people to find and purchase the services that THEY want.

Meanwhile, social enterprises (like the one I am currently setting up) are popping up to provide new, innovative, inclusive, creative and fun activities and services to empower vulnerable people, whatever their level of need. They use steering groups made up of people with disabilities make the decisions that will affect their projects. Advocacy networks are growing to listen to vulnerable people and make sure their voices are heard. Public and private bodies are accessing consultancy groups made up of people with various disabilities to ensure that their services are inclusive--and those same consultancy groups of disabled people provide training to government and private sector companies on how best to engage with and safeguard vulnerable people.

My point is that while what happened in Bristol was disgusting and shameful, the news is not all bad for vulnerable people. There are people (like me & my DH, my colleagues, and most of my friends) who spend their lives working to empower people with disabilities--and damnit, I intend to win!

tomhardyismydh Mon 06-Jun-11 01:56:29

flyingonion that unfortunately, simply is not true. There are many people with very complex needs that will not be suitable for supported living.As the skills and funding is so inadequate.

I have worked with individuals who will be very vulnerable and also those around them will be vulnerable also within supported living. that is not to say that smaller community facilities are not appropriate, but supported living just does not genarate the appropriate funding for some people.

The sad thing is however metaljacket the hospital and institution you describe is just that of the advertising from the hospital in panorama who would have thought this place would be featuring in panorama. so specialised and profesionaly run isnt it?

only 30% of individuals able to access self directed support, that is also not enough. in my area alone a 12 bedded respite unit has been merged with a 10 bedded critical care and emergency/assessment unit that will result in a 6 bedded respite unit.

The vision is to have people cared and supported for within family units "shared lives", there are only 25 shared lives facilitators and the projection is that in order to provide a service to the population of adults with LD in my area they require 250 shared lives placements. That is supposed to happen within 6 months of these units closings. Along with the closure of these 16 beds, day care placements are also being reduced from an average of 30 hrs per week to 18 to 14 hours per week to only people with critical needs, people assessed as mild to moderate to not being in need will receive 0 hours, this is to provide a service to well over 500+ people.

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