Care At Home Care
A Report on
Care at Home, Care in the Home and Care within the NHS
Over the past two decades and more there have been huge changes made to the children’s residential care sector. There have been many reasons for this, abuse scandals, staffing problems and the effectiveness of group homes being called into question - also the cost effectiveness of these homes. It is far often cheaper to keep these young people at home, sometimes this is good and is far better for the young person concerned.
But what if it isn’t, what if the challenges of that young person are more than you can manage. They may be too violent, they may have difficulties you can’t understand. You may have difficulties helping them and it can have an impact on their ability to join in everyday activities. Challenging behaviour can include aggression, self-harm, …show more content…
destructiveness and disruptiveness. Unfortunately there is little or no support offered to families in this situation, and strong medications are often the only options available.
This report focuses on the need for more support and training for those who care for a young person with challenging behaviour at home, in a home and within the NHS.
A home will often offer high quality person centred care combined with an individual needs led education, focusing on developing the children 's abilities, skills and interests. A home and school that maintains dignity, is sensitive to individual need and promotes independent learning, a supportive and nurturing environment that encourages and promotes communication, positive behaviour patterns, cooperation and mutual respect.
This is possible because of training and 1-1 staffing, why is this not offered to families looking after those same young people?
Society sees these children as trouble makers, nobody wants them ‘living by them’. The answer is often detention centres or medication unfortunately.
But what if families had training?
MAPA (management of actual or potential aggression) training for those that are living with violence
Signing or total communication for those with difficulty communicating.
Courses about the young persons special needs ie, sensory processing, ASD,EBD etc
Coping strategies
Extra support / carers
For some reason if you work in a home for these young people you’re offered all the training you need and more, families that look after these same young people are offered nothing. The case below is exactly one of those situations.
Parents ' Perspective
Alison
I am a single parent of two boys. My youngest son, Steven, is severely autistic, (classical Autism) and also has severe learning difficulties (SLD). He has no speech at all, is in nappies most of the time and attends a SLD school where he is in the autistic unit. I am unable to work, as I have no one to look after Steven in the school holidays.
My husband left me several years ago, when Steven was 4. He has Steven to visit about twice a year if I am lucky! I think he would not be bothered if his son went into a home, but I couldn’t do that to Steven so I struggle on. His teacher has said to me that he is very difficult, and she admires me for keeping him at home.
Let me describe my son’s behaviour. He has no speech, but has begun to use Pecs symbols to request food, drink or the toilet. He will use the toilet for a wee but not to defecate, at the moment, but we are working on it! He will also try to eat odd things, paper clips, play dough, stuff on the floor and will nip threads from cushions etc, give them a good chewing and swallow them. I am told this is not uncommon in autistic children.
He is quite tall. I am only 5ft 2ins and he reaches my chin. He is very, very strong and very aggressive, especially when he doesn’t get his own way, eg. if he has to leave somewhere he doesn’t want to, or if he is made to stop doing an activity he enjoys. When he is having a tantrum he will kick, over and over, bite, punch and hit out. More often than not, he is doing all of these four things at once, and you can’t always get out of his way if you are trying to stop him doing something, or touching something he shouldn’t.
He is obsessed with things like TVs, video recorders, stereos and game stations, and is likely to break items like CDs or DVDs. Friends and family will not allow him into their homes because he is so destructive. This makes me very isolated. People will see me on my own, or have me in their house on my own, but will not have anything to do with me when I have Steven. It makes me very sad to say the least.
Outside of the house, Steven is obsessed with video shops, game or computer shops and fruit machines. You can never walk past a pub without him trying to run in. He is also obsessed with cash tills, buttons on buses and computer screens, often in shops and restaurants. He likes to play with cash machines, ticket machines and vending machines – any kind of machine that has buttons. He will press the button on a hot drinks machine and watch the drink spurt down the drain!
He tries to turn off arcade machines by the mains switch, as he knows this will make the machine shut off, then start up again, which he likes to watch. Obviously this kind of behaviour doesn’t go down too well when we are out! It makes the places I can take him very limited. I can no longer take him out by myself as you cannot turn your back on him for a second. He may run off and has no awareness of the dangers of traffic.
I was advised by my social worker and clinical psychologist not to take Steven out on my own because of his aggressive outbursts, so often Steven and I are prisoners in our own home. I am in the house with the front door and garden gate locked, not able to take him out. Steven wants to go out and indicates this by trying to open the front door, or by getting his buggy out from under the stairs. He is unhappy and frustrated, and so am I.
I am now on anti-depressant tablets from the doctor because the situation makes me so unhappy. But I found my own temporary solution to this situation by putting a job advert on the local university website, to find someone to accompany myself and Steven on outings. I offer £8 per hour and a young girl now comes with me on a regular basis. I did have a carers assessment but apparently there is no money left. So I use my credit card to pay her myself. I am going more and more into debt, but it saves my sanity so I pay it.
I will never abandon Steven as I love him too much, and I will keep him at home as long as I possibly can. If he ever does live away from home I would hope to see him at weekends, even if I was not able to take him out, and visit him during the week. Steven gets bigger and stronger every day, but despite all this he is still very loveable and affectionate. Maybe he would benefit from going to a specialist school, although I haven’t received any help or advice about that.
January 2003
This story unfortunately is more common than it is uncommon, lack of support and backup has become the norm! I have myself encountered many families in this situation when strong anti psychotic medications become their only release. For Alison and many other parents having the time to search for the advice she needs, the ability to visit the appropriate schools/places are only the start of their problems. In a report in the BBC news Sarah Teather said the current system for determining the help children get was too "adversarial". This needs to change.
The other problem is that when you do see homes in the paper it is only negative and result of inquiries into abuse allegations The report shown below about Winterview care home is an example of such a home.
Winterview Care Home
A private care home for severely disabled people put its own profits before basic humanity, a scathing inquiry into abuse has found.
Regulators, police, social services and the NHS are all heavily criticised in an official report for failing to pick up warning signs about the treatment of patients at the Winterbourne View home in Gloucestershire.
It was published after 11 members of staff at the home pleaded guilty to almost 40 charges of neglect and ill treatment of people with severe learning difficulties in their care. The scandal only came to light after an undercover reporter for the BBC’s Panorama programme filmed abuse taking place after being tipped off by Terry Bryan, a former senior nurse. The footage showed frail and confused residents being forcibly pinned to the ground by groups of staff, beaten, soaked with water, trapped under chairs and having their hair pulled and eyes poked.
But Dr Margaret Flynn, who conducted the Serious Case Review into events at the home, said yesterday that the crimes which came to light are likely to be only the “tip of the iceberg”. She found that there was “institutional abuse” of patients with restraint used on a daily basis and that vulnerable patients were “chronically under-protected”. She said that had it not been for the undercover report the abuse would have taken a very long time to come to light, if ever.
But she noted that even after the BBC raised the alarm one patient was kept under restraint for 11 hours.
Avon and Somerset Police had 29 separate contacts with the home in the three years leading up to the exposures but failed to notice a pattern of abuse, the report says. South Gloucestershire Council received 40 so-called “safeguarding alerts” about vulnerable patients but did not detect the abuse.
Meanwhile, even when Mr Bryan contacted the CQC directly with an email entitled “I’ve Had Enough”, the watchdog failed to contact him or even class him as a whistleblower. Another member of staff also contacted the watchdog but there is no record of her call, the report notes.
“The Review confirms that the apparatus of oversight across sectors was unequal to the task of uncovering the fact and extent of abuses and crimes at Winterview Hospital,” she concludes.
Clifton House
A RESPITE care home for severely disabled children has closed pending a safeguarding investigation.
Parents are devastated after Coventry City Council suspended all its services at charity-run Clifton House, to ensure children are safe from harm.
The Telegraph reported that it was in response to a recent incident when one child injured another. Both had been left unsupervised.
Families using Clifton House complain they were “left in the lurch” without any explanation or alternative arrangements – and are in the dark as to when the care home might open again.
Last year’s accounts for Entrust Care Limited, seen by the Telegraph, outlined management changes, a £90,000 deficit and reliance on cash reserves, partly because of falling donations and agency staff costs.
Parents say Clifton House is the city’s only facility to offer 24-hour respite care for children whose physical or learning disabilities are so severe they need one-on-one staff supervision. Children can stay for several consecutive days and nights once a month – giving families a much needed break from looking after loved ones needing constant care. Youngsters also learn independence skills.One parent told the Telegraph they were phoned by Coventry City Council last week before receiving the letter – to be told services were suspended “due to an investigation”.
These were some of the comments left by families of those who used the service
bumblebee
7:34 PM on 7/7/2012
“As a parent of a child who has regular stays at Clifton house, i was not informed about the closure until Thursday 6th July we were given no information about why and when it will reopen, my son enjoys his stays there and always comes home happy, the staff are great! We are gutted that this service has been suspended, and were left in the lurch as my child needs this respite care”
bogtrotterpete
9:09 PM on 7/7/2012
“I too have a child that goes to Clifton house and the service we have had is second to none.
This incident happened awhile ago and its baffling why suspend all of the service and why now. Agency staff could have brought in and the service could have been continued. In a normal school they wouldn 't close the whole school if something like this happened. The line " we work to find a long-term sustainable solution" bothers me and other parents as reading between the lines as said in the article it has financial difficulties and we expect it to re-open then close stating that midland heart have pulled out. Parents and carers note by LAW if your child has been assessed by the council and that need hasn 't been met you can sue the council, not being able to finance it isn 't an excuse.
A Mr Luke Clements who drafts members bills in parliament for carers has taken many councils to court for not providing the appropriate service for disabled people and carers. Nearly a quarter of adult care homes in England are currently failing to comply with at least one of the essential standards required by law under the new assessment regime introduced last year.”
Both of these stories feature home which have been closed for safeguarding reasons vary greatly;
Winterview has a catalogued systematic abuse of patients over a frighteningly long period of time by a large number of carers.
Clifton House was closed when one child injured another when left unattended.
This shows how justifications for home closures can vary between counties. While the closing of Winterview was in no doubt in need of closing, one has to wonder if stories such as that had an influence on the closing of Clifton House.
Parents say Clifton House is the city’s only facility to offer 24-hour respite care for children whose physical or learning disabilities are so severe they need one-on-one staff supervision. If this is the case had this been considered beforehand, or did the fear of what had happened at other homes cause them to react too quickly?
Above are comment from parents of children who used the home, their fears are clear, where will they find help now?
I believe there is a great difference between a home which is have financial difficulties (which is of little surprise with the cost of mandatory training) and one which is left open for long periods having had repeated complaints.
Unfortunately home are frequently all tarred with the same brush.
But is it any different within the bigger healthcare sectors?
Below are examples where training and staffing again make it impossible for those with special needs and their families to know who to trust and who to turn to. The NHS and the CQC
The Care Quality Commission (CQC), has disclosed for the first time that 4,000 out of 18,000 homes have been judged “non-compliant” on at least one of the 16 new minimum standards. The number of residents living in these failing homes is believed to be at least 100,000. You have to wonder are all of these minimum standards needed or are they actually the reason we are failing those who need us the most.
So much time is spent on paperwork - there are 38 minimum standards and The Care Standards Act has 123 sections!
Could this be part of the problem, levels and cost of training, staffing, the cost of living increasing and the funding received decreasing. It’s no wonder there are difficulties, and yet homes are STILL better off that families struggling at home.
Relatives have been left in the dark about which homes are failing as the watchdog’s new online “care directory”, which is intended to act as a guide for the public, has been delayed due to “technical difficulties”. Unfortunately this is not limited to care homes as the report below shows us.
In 2004, Mencap launched Treat me right! – this is a major campaign for better healthcare services for people with a learning disability. This contains a summary of the key findings and recommendations Treat me right!
The main argument
People with a learning disability have poorer health than the general population. This is partly due to:
• conditions that can be related to their disability (for example, epilepsy, thyroid problems, sight and hearing problems)
• socio-economic factors – people with a learning disability are generally poor – living on benefits or a low income. As a result, they are more likely to have unhealthy lifestyles.
But it is also due to a poor standard of treatment within NHS services, which often seems to stem from ignorance and prejudice among healthcare professionals towards people with a learning disability.
This report will set out why we believe there is institutional discrimination within the NHS, and why people with a learning disability get worse healthcare than non-disabled people. We present the stories of six people who we believe have died unnecessarily. We do so because healthcare professionals need to realise the serious – even fatal – consequences of their lack of understanding.
We do so to point out that these professionals must work to ensure that such tragedies can never happen again.
This report follows on from Mencap’s Treat me right! report and campaign in 2004, which exposed the unequal healthcare that people with a learning disability often receive from healthcare professionals. The report made clear that much work needs to be done within the NHS to ensure that people with a learning disability are treated decently and equally.
Since the launch of our Treat me right! campaign, many cases of appalling treatment of people with a learning disability in hospitals around the country have come to light. The six cases presented in this report share common factors. In our view, they raise serious concerns about the way people with a learning disability are treated within our healthcare system.
The Disability Rights Commission (DRC) recently published the results of a formal investigation into physical health inequalities experienced by people with learning disabilities and mental health problems. The investigation showed that people with a learning disability receive fewer screening tests and fewer health investigations. It showed that people with a learning disability are less likely to get the healthcare they need. Commenting on the report, the Chairman of the DRC stated that the view of the inquiry panel was that ‘early deaths in these groups are not acceptable’ and that they had encountered ‘complacency and a lazy fatalism that these groups just do die younger’.
But the fact is, that shocking and tragic as these reports are, there has been an astonishing lack of response to them at Government level. Health inequalities have been widely documented and the solutions clearly identified – including the need for a confidential inquiry into premature deaths, annual health checks and staff training.
Mencap present the stories of six people who they believe have died unnecessarily. They do so because healthcare professionals need to realise the serious – even fatal – consequences of their lack of understanding. They do so to point out that these professionals must work to ensure that such tragedies can never happen again. Two of the stories of these young people follow
Tom
Tom died on 25 May 2004. He was just 20 years old. He had profound and multiple learning disabilities. He died of aspiration pneumonia and reflux oesophagitus. A hospice consultant recommended that the underlying causes of his pain were investigated by a gastroenterologist over a year before he died, but no action was taken on this issue until it was far too late. Medical assessments promised at the NHS assessment unit Tom was admitted to never took place, and Tom’s parents found that the concerns they raised over Tom’s expressions of pain weren’t listened to.
Tom’s family has complained to his GP, the primary care trust, the hospital and the Healthcare Commission.
Tom had profound and multiple learning disabilities and complex health needs. He attended a residential special school. His parents raised concerns on numerous occasions about planning for Tom’s future after he left school. However, social services took no action until very late on. There then began a frantic search to find a suitable placement for Tom.
Prior to leaving the school, Tom was showing signs of distress.
The school put this down to the fact that he was no longer happy there. Convinced that Tom was in pain, his parents had insisted that he was referred for medical investigations. Tom went to a hospice where the consultant recommended that further investigations were carried out to identify the underlying cause of the pain he was experiencing. The consultant suggested that the pain was likely to be related to Tom’s digestive system.
This advice concerning further investigations does not appear to have been acted on. Tom’s GP decided that he should not have a PEG feeding tube inserted because of fears that Tom would not tolerate it. His parents were not involved in the discussion about how best to ensure that Tom was receiving adequate nutrition. It soon became apparent that there was nowhere suitable for Tom to move to after leaving school, within the required timescale. Tom was eventually placed at an NHS psychiatric assessment unit. His parents were told that they would assess his needs, including his medical needs. However, no such assessment ever took place.
During this period, Tom’s health continued to deteriorate. He was steadily losing weight and exhibiting highly unusual behaviour – such as gouging his head. Tom’s parents were sure he was expressing the pain he was in. Finally, a place became available at a social services residential home. The concerns raised by Tom’s parents about his health were at last acted upon, and staff ensured that Tom was admitted to hospital. Following tests, they found that Tom had an ulcerated oesophagus. The hospital agreed to insert a PEG so that Tom could be fed by tube and the operation to do this was carried out. However, Tom died before receiving nutrition as by this time he was extremely weak.
Emma
Emma died of cancer on 25 July 2004, aged just 26. She had a severe learning disability, which meant that she sometimes exhibited challenging behaviour and had difficulty in communicating how she felt. The hospital delayed treating her because they said she would not co-operate with treatment and therefore could not consent to treatment.
Emma’s family has complained to the hospital and subsequently to the
Healthcare Commission.
Her story is below ;
Emma’s mother first took her to her GP because Emma had not eaten for eight days. Her GP suggested it might be a virus. Her mother was not satisfied, as Emma was very unwell and still not eating. She decided to find another GP.
A month later, Emma was admitted to a surgical ward at the hospital with a swelling in her groin. She had an X-ray, and a scan culminating in a biopsy. While she was in hospital, Emma was distressed and in pain. She was not eating and couldn’t take a painkiller orally. The hospital found Emma’s behaviour very difficult to manage. Emma was discharged from the hospital on the grounds that there was nothing more they could do for her. She was sent home without any help to control her pain.
Eleven days later Emma and her mother went back to the hospital to get the results of the biopsy. They were told that Emma had Lymphoma B1 type cancer and that, with treatment, she had a 50:50 chance of survival. But the doctors decided not to treat her, saying that she would not co-operate with the
treatment.
Emma and her mother were sent home with no advice about Emma’s care needs and still no way of dealing with her pain. Emma was back in hospital again five days later, as by this time she had stopped drinking. Again, the doctor wanted to discharge her. Her mother refused to take her home. Emma received no treatment at the hospital for two more days, with the doctors again saying they could not treat her as she was unable to consent.
So her mother instructed a solicitor to serve notice on the doctors to start treatment for pain relief by 9am the following day. Treatment did not start, so the solicitor started an action in the High Court and the hospital finally agreed to treat Emma.
A second medical opinion was sought and this doctor said that as the cancer had advanced she now had only a 10% chance of survival with treatment. It was decided that palliative care was now the only course of action to take.
A few days later Emma was moved to a hospice where she received excellent care for about a month. She started drinking again and her pain was well controlled until she died.
Summary
Having, living with and understanding anyone with challenging behaviours and/or special needs can be difficult. The people is amount of people who don’t try, families who do are ignored, carers who do are easily taken away without a second thought. Funding cut, medication increased, an extra lock on the door, lack of time, thought and money.
It’s so easy……then you hear about the young person with special needs gone missing, the abuse at care homes, the young boy or girl that dies but could have been easily saved by those who swore to help.
Lack of understanding for the most vulnerable within the NHS is a huge problem most recent highlights are about the elderly but young people are suffering just as much.
Families are fighting this battle alone. The few home that try to make it to match the standards set, to maintain good staffing and training, to keep a nice home, and keep costs affordable for young people to live there are facing a constant and uphill battle. Most close, leaving the young people they once cared for and their families stuck once again hoping the next home isn’t like the one they saw on the news.
References
Worldwide Web
Copyright 2008 - 2013, Challenging Behaviour Foundation http://www.challengingbehaviour.org.uk/cbf-resources/information-sheets/parents-persepctives.html By Andrew Pettie9:44AM BST 01 Jun 2011
Copyright of Telegraph Media Group Limited 2013 http://www.telegraph.co.uk/culture/tvandradio/8549511/Panorama-Undercover-Care-BBC-One-review.html by Les Reid, Coventry Telegraph Jul 7 2012 http://www.coventrytelegraph.net/news/coventry-news/2012/07/07/clifton-house-care-home-closed-as-council-launch-safeguarding-probe-92746-31343016/ WEDNESDAY, AUGUST 08, 2012
The 'Don 't Care Homes ' - A Disgrace
Posted by Sussex Socialist at 1:00 am http://socialismoryourmoneyback.blogspot.co.uk/2012/08/the-dont-care-homes-disgrace.html March 2007
Mencap
123 Golden Lane
London EC1Y 0RT http://www.nmc-uk.org/Documents/Safeguarding/England/1/Death%20by%20Indifference.pdf By Heather SharpEducation reporter, BBC News
10 September 2010
http://www.bbc.co.uk/news/education-11262190
Care at Home, Care in the Home and Care within the NHS
Over the past two decades and more there have been huge changes made to the children’s residential care sector. There have been many reasons for this, abuse scandals, staffing problems and the effectiveness of group homes being called into question - also the cost effectiveness of these homes. It is far often cheaper to keep these young people at home, sometimes this is good and is far better for the young person concerned.
But what if it isn’t, what if the challenges of that young person are more than you can manage. They may be too violent, they may have difficulties you can’t understand. You may have difficulties helping them and it can have an impact on their ability to join in everyday activities. Challenging behaviour can include aggression, self-harm, …show more content…
destructiveness and disruptiveness. Unfortunately there is little or no support offered to families in this situation, and strong medications are often the only options available.
This report focuses on the need for more support and training for those who care for a young person with challenging behaviour at home, in a home and within the NHS.
A home will often offer high quality person centred care combined with an individual needs led education, focusing on developing the children 's abilities, skills and interests. A home and school that maintains dignity, is sensitive to individual need and promotes independent learning, a supportive and nurturing environment that encourages and promotes communication, positive behaviour patterns, cooperation and mutual respect.
This is possible because of training and 1-1 staffing, why is this not offered to families looking after those same young people?
Society sees these children as trouble makers, nobody wants them ‘living by them’. The answer is often detention centres or medication unfortunately.
But what if families had training?
MAPA (management of actual or potential aggression) training for those that are living with violence
Signing or total communication for those with difficulty communicating.
Courses about the young persons special needs ie, sensory processing, ASD,EBD etc
Coping strategies
Extra support / carers
For some reason if you work in a home for these young people you’re offered all the training you need and more, families that look after these same young people are offered nothing. The case below is exactly one of those situations.
Parents ' Perspective
Alison
I am a single parent of two boys. My youngest son, Steven, is severely autistic, (classical Autism) and also has severe learning difficulties (SLD). He has no speech at all, is in nappies most of the time and attends a SLD school where he is in the autistic unit. I am unable to work, as I have no one to look after Steven in the school holidays.
My husband left me several years ago, when Steven was 4. He has Steven to visit about twice a year if I am lucky! I think he would not be bothered if his son went into a home, but I couldn’t do that to Steven so I struggle on. His teacher has said to me that he is very difficult, and she admires me for keeping him at home.
Let me describe my son’s behaviour. He has no speech, but has begun to use Pecs symbols to request food, drink or the toilet. He will use the toilet for a wee but not to defecate, at the moment, but we are working on it! He will also try to eat odd things, paper clips, play dough, stuff on the floor and will nip threads from cushions etc, give them a good chewing and swallow them. I am told this is not uncommon in autistic children.
He is quite tall. I am only 5ft 2ins and he reaches my chin. He is very, very strong and very aggressive, especially when he doesn’t get his own way, eg. if he has to leave somewhere he doesn’t want to, or if he is made to stop doing an activity he enjoys. When he is having a tantrum he will kick, over and over, bite, punch and hit out. More often than not, he is doing all of these four things at once, and you can’t always get out of his way if you are trying to stop him doing something, or touching something he shouldn’t.
He is obsessed with things like TVs, video recorders, stereos and game stations, and is likely to break items like CDs or DVDs. Friends and family will not allow him into their homes because he is so destructive. This makes me very isolated. People will see me on my own, or have me in their house on my own, but will not have anything to do with me when I have Steven. It makes me very sad to say the least.
Outside of the house, Steven is obsessed with video shops, game or computer shops and fruit machines. You can never walk past a pub without him trying to run in. He is also obsessed with cash tills, buttons on buses and computer screens, often in shops and restaurants. He likes to play with cash machines, ticket machines and vending machines – any kind of machine that has buttons. He will press the button on a hot drinks machine and watch the drink spurt down the drain!
He tries to turn off arcade machines by the mains switch, as he knows this will make the machine shut off, then start up again, which he likes to watch. Obviously this kind of behaviour doesn’t go down too well when we are out! It makes the places I can take him very limited. I can no longer take him out by myself as you cannot turn your back on him for a second. He may run off and has no awareness of the dangers of traffic.
I was advised by my social worker and clinical psychologist not to take Steven out on my own because of his aggressive outbursts, so often Steven and I are prisoners in our own home. I am in the house with the front door and garden gate locked, not able to take him out. Steven wants to go out and indicates this by trying to open the front door, or by getting his buggy out from under the stairs. He is unhappy and frustrated, and so am I.
I am now on anti-depressant tablets from the doctor because the situation makes me so unhappy. But I found my own temporary solution to this situation by putting a job advert on the local university website, to find someone to accompany myself and Steven on outings. I offer £8 per hour and a young girl now comes with me on a regular basis. I did have a carers assessment but apparently there is no money left. So I use my credit card to pay her myself. I am going more and more into debt, but it saves my sanity so I pay it.
I will never abandon Steven as I love him too much, and I will keep him at home as long as I possibly can. If he ever does live away from home I would hope to see him at weekends, even if I was not able to take him out, and visit him during the week. Steven gets bigger and stronger every day, but despite all this he is still very loveable and affectionate. Maybe he would benefit from going to a specialist school, although I haven’t received any help or advice about that.
January 2003
This story unfortunately is more common than it is uncommon, lack of support and backup has become the norm! I have myself encountered many families in this situation when strong anti psychotic medications become their only release. For Alison and many other parents having the time to search for the advice she needs, the ability to visit the appropriate schools/places are only the start of their problems. In a report in the BBC news Sarah Teather said the current system for determining the help children get was too "adversarial". This needs to change.
The other problem is that when you do see homes in the paper it is only negative and result of inquiries into abuse allegations The report shown below about Winterview care home is an example of such a home.
Winterview Care Home
A private care home for severely disabled people put its own profits before basic humanity, a scathing inquiry into abuse has found.
Regulators, police, social services and the NHS are all heavily criticised in an official report for failing to pick up warning signs about the treatment of patients at the Winterbourne View home in Gloucestershire.
It was published after 11 members of staff at the home pleaded guilty to almost 40 charges of neglect and ill treatment of people with severe learning difficulties in their care. The scandal only came to light after an undercover reporter for the BBC’s Panorama programme filmed abuse taking place after being tipped off by Terry Bryan, a former senior nurse. The footage showed frail and confused residents being forcibly pinned to the ground by groups of staff, beaten, soaked with water, trapped under chairs and having their hair pulled and eyes poked.
But Dr Margaret Flynn, who conducted the Serious Case Review into events at the home, said yesterday that the crimes which came to light are likely to be only the “tip of the iceberg”. She found that there was “institutional abuse” of patients with restraint used on a daily basis and that vulnerable patients were “chronically under-protected”. She said that had it not been for the undercover report the abuse would have taken a very long time to come to light, if ever.
But she noted that even after the BBC raised the alarm one patient was kept under restraint for 11 hours.
Avon and Somerset Police had 29 separate contacts with the home in the three years leading up to the exposures but failed to notice a pattern of abuse, the report says. South Gloucestershire Council received 40 so-called “safeguarding alerts” about vulnerable patients but did not detect the abuse.
Meanwhile, even when Mr Bryan contacted the CQC directly with an email entitled “I’ve Had Enough”, the watchdog failed to contact him or even class him as a whistleblower. Another member of staff also contacted the watchdog but there is no record of her call, the report notes.
“The Review confirms that the apparatus of oversight across sectors was unequal to the task of uncovering the fact and extent of abuses and crimes at Winterview Hospital,” she concludes.
Clifton House
A RESPITE care home for severely disabled children has closed pending a safeguarding investigation.
Parents are devastated after Coventry City Council suspended all its services at charity-run Clifton House, to ensure children are safe from harm.
The Telegraph reported that it was in response to a recent incident when one child injured another. Both had been left unsupervised.
Families using Clifton House complain they were “left in the lurch” without any explanation or alternative arrangements – and are in the dark as to when the care home might open again.
Last year’s accounts for Entrust Care Limited, seen by the Telegraph, outlined management changes, a £90,000 deficit and reliance on cash reserves, partly because of falling donations and agency staff costs.
Parents say Clifton House is the city’s only facility to offer 24-hour respite care for children whose physical or learning disabilities are so severe they need one-on-one staff supervision. Children can stay for several consecutive days and nights once a month – giving families a much needed break from looking after loved ones needing constant care. Youngsters also learn independence skills.One parent told the Telegraph they were phoned by Coventry City Council last week before receiving the letter – to be told services were suspended “due to an investigation”.
These were some of the comments left by families of those who used the service
bumblebee
7:34 PM on 7/7/2012
“As a parent of a child who has regular stays at Clifton house, i was not informed about the closure until Thursday 6th July we were given no information about why and when it will reopen, my son enjoys his stays there and always comes home happy, the staff are great! We are gutted that this service has been suspended, and were left in the lurch as my child needs this respite care”
bogtrotterpete
9:09 PM on 7/7/2012
“I too have a child that goes to Clifton house and the service we have had is second to none.
This incident happened awhile ago and its baffling why suspend all of the service and why now. Agency staff could have brought in and the service could have been continued. In a normal school they wouldn 't close the whole school if something like this happened. The line " we work to find a long-term sustainable solution" bothers me and other parents as reading between the lines as said in the article it has financial difficulties and we expect it to re-open then close stating that midland heart have pulled out. Parents and carers note by LAW if your child has been assessed by the council and that need hasn 't been met you can sue the council, not being able to finance it isn 't an excuse.
A Mr Luke Clements who drafts members bills in parliament for carers has taken many councils to court for not providing the appropriate service for disabled people and carers. Nearly a quarter of adult care homes in England are currently failing to comply with at least one of the essential standards required by law under the new assessment regime introduced last year.”
Both of these stories feature home which have been closed for safeguarding reasons vary greatly;
Winterview has a catalogued systematic abuse of patients over a frighteningly long period of time by a large number of carers.
Clifton House was closed when one child injured another when left unattended.
This shows how justifications for home closures can vary between counties. While the closing of Winterview was in no doubt in need of closing, one has to wonder if stories such as that had an influence on the closing of Clifton House.
Parents say Clifton House is the city’s only facility to offer 24-hour respite care for children whose physical or learning disabilities are so severe they need one-on-one staff supervision. If this is the case had this been considered beforehand, or did the fear of what had happened at other homes cause them to react too quickly?
Above are comment from parents of children who used the home, their fears are clear, where will they find help now?
I believe there is a great difference between a home which is have financial difficulties (which is of little surprise with the cost of mandatory training) and one which is left open for long periods having had repeated complaints.
Unfortunately home are frequently all tarred with the same brush.
But is it any different within the bigger healthcare sectors?
Below are examples where training and staffing again make it impossible for those with special needs and their families to know who to trust and who to turn to. The NHS and the CQC
The Care Quality Commission (CQC), has disclosed for the first time that 4,000 out of 18,000 homes have been judged “non-compliant” on at least one of the 16 new minimum standards. The number of residents living in these failing homes is believed to be at least 100,000. You have to wonder are all of these minimum standards needed or are they actually the reason we are failing those who need us the most.
So much time is spent on paperwork - there are 38 minimum standards and The Care Standards Act has 123 sections!
Could this be part of the problem, levels and cost of training, staffing, the cost of living increasing and the funding received decreasing. It’s no wonder there are difficulties, and yet homes are STILL better off that families struggling at home.
Relatives have been left in the dark about which homes are failing as the watchdog’s new online “care directory”, which is intended to act as a guide for the public, has been delayed due to “technical difficulties”. Unfortunately this is not limited to care homes as the report below shows us.
In 2004, Mencap launched Treat me right! – this is a major campaign for better healthcare services for people with a learning disability. This contains a summary of the key findings and recommendations Treat me right!
The main argument
People with a learning disability have poorer health than the general population. This is partly due to:
• conditions that can be related to their disability (for example, epilepsy, thyroid problems, sight and hearing problems)
• socio-economic factors – people with a learning disability are generally poor – living on benefits or a low income. As a result, they are more likely to have unhealthy lifestyles.
But it is also due to a poor standard of treatment within NHS services, which often seems to stem from ignorance and prejudice among healthcare professionals towards people with a learning disability.
This report will set out why we believe there is institutional discrimination within the NHS, and why people with a learning disability get worse healthcare than non-disabled people. We present the stories of six people who we believe have died unnecessarily. We do so because healthcare professionals need to realise the serious – even fatal – consequences of their lack of understanding.
We do so to point out that these professionals must work to ensure that such tragedies can never happen again.
This report follows on from Mencap’s Treat me right! report and campaign in 2004, which exposed the unequal healthcare that people with a learning disability often receive from healthcare professionals. The report made clear that much work needs to be done within the NHS to ensure that people with a learning disability are treated decently and equally.
Since the launch of our Treat me right! campaign, many cases of appalling treatment of people with a learning disability in hospitals around the country have come to light. The six cases presented in this report share common factors. In our view, they raise serious concerns about the way people with a learning disability are treated within our healthcare system.
The Disability Rights Commission (DRC) recently published the results of a formal investigation into physical health inequalities experienced by people with learning disabilities and mental health problems. The investigation showed that people with a learning disability receive fewer screening tests and fewer health investigations. It showed that people with a learning disability are less likely to get the healthcare they need. Commenting on the report, the Chairman of the DRC stated that the view of the inquiry panel was that ‘early deaths in these groups are not acceptable’ and that they had encountered ‘complacency and a lazy fatalism that these groups just do die younger’.
But the fact is, that shocking and tragic as these reports are, there has been an astonishing lack of response to them at Government level. Health inequalities have been widely documented and the solutions clearly identified – including the need for a confidential inquiry into premature deaths, annual health checks and staff training.
Mencap present the stories of six people who they believe have died unnecessarily. They do so because healthcare professionals need to realise the serious – even fatal – consequences of their lack of understanding. They do so to point out that these professionals must work to ensure that such tragedies can never happen again. Two of the stories of these young people follow
Tom
Tom died on 25 May 2004. He was just 20 years old. He had profound and multiple learning disabilities. He died of aspiration pneumonia and reflux oesophagitus. A hospice consultant recommended that the underlying causes of his pain were investigated by a gastroenterologist over a year before he died, but no action was taken on this issue until it was far too late. Medical assessments promised at the NHS assessment unit Tom was admitted to never took place, and Tom’s parents found that the concerns they raised over Tom’s expressions of pain weren’t listened to.
Tom’s family has complained to his GP, the primary care trust, the hospital and the Healthcare Commission.
Tom had profound and multiple learning disabilities and complex health needs. He attended a residential special school. His parents raised concerns on numerous occasions about planning for Tom’s future after he left school. However, social services took no action until very late on. There then began a frantic search to find a suitable placement for Tom.
Prior to leaving the school, Tom was showing signs of distress.
The school put this down to the fact that he was no longer happy there. Convinced that Tom was in pain, his parents had insisted that he was referred for medical investigations. Tom went to a hospice where the consultant recommended that further investigations were carried out to identify the underlying cause of the pain he was experiencing. The consultant suggested that the pain was likely to be related to Tom’s digestive system.
This advice concerning further investigations does not appear to have been acted on. Tom’s GP decided that he should not have a PEG feeding tube inserted because of fears that Tom would not tolerate it. His parents were not involved in the discussion about how best to ensure that Tom was receiving adequate nutrition. It soon became apparent that there was nowhere suitable for Tom to move to after leaving school, within the required timescale. Tom was eventually placed at an NHS psychiatric assessment unit. His parents were told that they would assess his needs, including his medical needs. However, no such assessment ever took place.
During this period, Tom’s health continued to deteriorate. He was steadily losing weight and exhibiting highly unusual behaviour – such as gouging his head. Tom’s parents were sure he was expressing the pain he was in. Finally, a place became available at a social services residential home. The concerns raised by Tom’s parents about his health were at last acted upon, and staff ensured that Tom was admitted to hospital. Following tests, they found that Tom had an ulcerated oesophagus. The hospital agreed to insert a PEG so that Tom could be fed by tube and the operation to do this was carried out. However, Tom died before receiving nutrition as by this time he was extremely weak.
Emma
Emma died of cancer on 25 July 2004, aged just 26. She had a severe learning disability, which meant that she sometimes exhibited challenging behaviour and had difficulty in communicating how she felt. The hospital delayed treating her because they said she would not co-operate with treatment and therefore could not consent to treatment.
Emma’s family has complained to the hospital and subsequently to the
Healthcare Commission.
Her story is below ;
Emma’s mother first took her to her GP because Emma had not eaten for eight days. Her GP suggested it might be a virus. Her mother was not satisfied, as Emma was very unwell and still not eating. She decided to find another GP.
A month later, Emma was admitted to a surgical ward at the hospital with a swelling in her groin. She had an X-ray, and a scan culminating in a biopsy. While she was in hospital, Emma was distressed and in pain. She was not eating and couldn’t take a painkiller orally. The hospital found Emma’s behaviour very difficult to manage. Emma was discharged from the hospital on the grounds that there was nothing more they could do for her. She was sent home without any help to control her pain.
Eleven days later Emma and her mother went back to the hospital to get the results of the biopsy. They were told that Emma had Lymphoma B1 type cancer and that, with treatment, she had a 50:50 chance of survival. But the doctors decided not to treat her, saying that she would not co-operate with the
treatment.
Emma and her mother were sent home with no advice about Emma’s care needs and still no way of dealing with her pain. Emma was back in hospital again five days later, as by this time she had stopped drinking. Again, the doctor wanted to discharge her. Her mother refused to take her home. Emma received no treatment at the hospital for two more days, with the doctors again saying they could not treat her as she was unable to consent.
So her mother instructed a solicitor to serve notice on the doctors to start treatment for pain relief by 9am the following day. Treatment did not start, so the solicitor started an action in the High Court and the hospital finally agreed to treat Emma.
A second medical opinion was sought and this doctor said that as the cancer had advanced she now had only a 10% chance of survival with treatment. It was decided that palliative care was now the only course of action to take.
A few days later Emma was moved to a hospice where she received excellent care for about a month. She started drinking again and her pain was well controlled until she died.
Summary
Having, living with and understanding anyone with challenging behaviours and/or special needs can be difficult. The people is amount of people who don’t try, families who do are ignored, carers who do are easily taken away without a second thought. Funding cut, medication increased, an extra lock on the door, lack of time, thought and money.
It’s so easy……then you hear about the young person with special needs gone missing, the abuse at care homes, the young boy or girl that dies but could have been easily saved by those who swore to help.
Lack of understanding for the most vulnerable within the NHS is a huge problem most recent highlights are about the elderly but young people are suffering just as much.
Families are fighting this battle alone. The few home that try to make it to match the standards set, to maintain good staffing and training, to keep a nice home, and keep costs affordable for young people to live there are facing a constant and uphill battle. Most close, leaving the young people they once cared for and their families stuck once again hoping the next home isn’t like the one they saw on the news.
References
Worldwide Web
Copyright 2008 - 2013, Challenging Behaviour Foundation http://www.challengingbehaviour.org.uk/cbf-resources/information-sheets/parents-persepctives.html By Andrew Pettie9:44AM BST 01 Jun 2011
Copyright of Telegraph Media Group Limited 2013 http://www.telegraph.co.uk/culture/tvandradio/8549511/Panorama-Undercover-Care-BBC-One-review.html by Les Reid, Coventry Telegraph Jul 7 2012 http://www.coventrytelegraph.net/news/coventry-news/2012/07/07/clifton-house-care-home-closed-as-council-launch-safeguarding-probe-92746-31343016/ WEDNESDAY, AUGUST 08, 2012
The 'Don 't Care Homes ' - A Disgrace
Posted by Sussex Socialist at 1:00 am http://socialismoryourmoneyback.blogspot.co.uk/2012/08/the-dont-care-homes-disgrace.html March 2007
Mencap
123 Golden Lane
London EC1Y 0RT http://www.nmc-uk.org/Documents/Safeguarding/England/1/Death%20by%20Indifference.pdf By Heather SharpEducation reporter, BBC News
10 September 2010
http://www.bbc.co.uk/news/education-11262190