The Big Care Survey

The Government announced last year that it will be looking at social care reform in 2018. As part of the process, they want to hear from care users and carers so that they get a picture of what the system is like today and what the people it impacts want to see changed.

We want to hear from as many people who have experience with adult social care in England to be able to tell them what it looks like now and what needs to change, so we’ve launched a survey.

We want to hear from you if you need social care or are a carer who cares for someone who needs social care. As a carer,


Source: The Big Care Survey


Woman was trapped by violent husband because he was her carer, Royal Commission into Family Violence hears

Original post from The Age

‘…………..By   Reporter for The Age

A woman in a wheelchair whose husband raped and assaulted her over many years felt trapped in the relationship because he was also her carer.

In wrenching testimony before the the Royal Commission into Family Violence, ‘Melissa Brown’ said she felt abandoned by doctors she told about the violence but who did not report it.

“Yeah, I’ve done that. So what? All husbands do this. I can’t guarantee I won’t do it again.”

Even when her husband was finally served with an intervention order, there was no attempt to provide a replacement carer for Ms Brown and she was unable to shower for eight weeks.

After a decade of abuse,  when she had been raped in bed four times in one week, Ms Brown tried to die by suicide because she felt like there was no way out.

Her husband left her on the floor and went to bed, she told the hearing. It was her child who called an ambulance.

Hospital staff asked her if she wanted help but she was terrified of being left without a carer. In the end, she was sent home with her husband, who came to pick her up.

Ms Brown confided in her psychiatrist and other health workers over the years, but when asked her if she wanted to take it further, her confidence was low and felt she would not survive without him.

“How am I going to have a shower without anybody to help me? How am I going to get the kids to school if I’m having a pain day?”, she asked the commission.

Ms Brown said she felt let down by doctor-patient confidentiality and it should be mandatory to report family violence for all patients.

After she tried to die by suicide, the hospital emergency department reported the matter to child protection, who visited the family home and interviewed them in the same room.

“He was very matter of fact and upfront. He said ‘yeah, I’ve done that. So what? All husbands do this. I can’t guarantee I won’t do it again’.”

Police eventually served her husband with an intervention order and he was removed from the home. Even though she was unsure at the time, Ms Brown told the hearing she now believes it was the right thing to do.

“In hindsight it was what I needed…I would have killed myself, or he would have killed me.”

Her abuser regularly breached the order, sending message through social media and grew increasingly abusive. Eventually Ms Brown gathered up the courage to make a statement to police about the years of abuse, and he was charged.

But the abuse continued through the legal system: at the family court Ms Brown was “dumbfounded” to find she had no representation because she could not afford a lawyer and did not qualify for one through Legal Aid.

She had to liaise directly with her husband’s lawyer, who passed on messages from her husband. “Your husband wants you to know that he really, really loves you very much,” his lawyer told Ms Brown.

Her husband was also allowed to appear via video link in the courtroom – despite Ms Brown raising the issue –  until a judge realised it breached the intervention order and apologised.

“But the damage was done,” Ms Brown told the hearing.

Her experience in the County Court was much better – she was able to give evidence remotely and the camera was covered so she did not have to see him.

The Royal Commission on Wednesday is focused on mental health and its relationship to family violence.

Ms Brown said her husband often told her that her mental health problems were the reason for his behaviour.

“I just thought I was hopeless. Yes, I do have a mental health problem, I am responsible for everything that’s going on.”

Since her relationship ended her mental health has improved dramatically, and she no longer try to self harm, Ms Brown told the hearing.

Chief Commissioner Marcia Neave thanked Ms Brown for her strength and tenacity in appearing before the commission.  …………’


Dementia: a carer’s perspective

Original post from The King’s Fund


We speak to writer Nicci Gerrard about her father’s hospital care, and her campaign – John’s Campaign – that calls for the families and carers of people with dementia to be allowed to remain with them in hospital for as many hours of the day and night as necessary.

The date of my father’s actual death – the one on the certificate, on the order of service, the day his body was taken away and nikki-and-john-gerrard_2which we will remember at anniversaries and which would be carved into his gravestone, if he had one – was 9 November 2014.

But for nine months before this, he was like a ghost in his own life, and for those months we had been both tending and caring for him, and at the same time been saying goodbye to him and in some complicated way already mourning him.

My father was 86. For ten years he had had dementia, and so was on a path from which there was no turning back, but he was one of those who lived well with the condition: he lived in his own home with our mother, his wife of 61 years; he was mobile and articulate (he loved to tell stories about his vivid past); he was continent; he loved to walk by the river and work in his beloved garden, naming the birds and the flowers there. It’s true that he could no longer look after his money or make plans or drive or hold on a conversation; his memory was falling away and he increasingly lived in the present or in the far past. We – his children, scattered in different counties and one in Africa – looked after him as best we could, but we would not have called ourselves his carers: we were his sons and daughters. My mother was not his carer, but his wife. In a sense, he was a demonstration of how dementia, a shadow and a blight, need not wreck a life.

He went into hospital for leg ulcers that were not responding to antibiotics and somehow got stuck there (the ulcers were slow to heal, there wasn’t a bed on the rehab ward…). There were visiting hours in the hospital and there was an outbreak of norovirus that meant none of us could get in to see him except for snatched visits. For more than four weeks, he lay in his bed and there was no-one to make sure he ate his food and drank plenty of liquid; no-one to read to him and talk to him and hold his hand and tell him he was safe and loved; no-one to be his advocate, his voice, his memory bank.

How I wish I had known then what I know now. My father came out of hospital slumped in a wheelchair. He was skeletal and incontinent. He could not walk and nor could he speak, only make a mumble of sound. We thought we could bring him back to the life he had loved, but we couldn’t.

Our campaign – John’s Campaign, named in his honour – was born out of this experience. I do not know how much longer my father would have lived if he had not gone into hospital, but I’m certain that the last part of his life was a catastrophe that we could have averted. One in four people in hospital beds have dementia, and hospital staff simply cannot cope with the demands that are placed on them – anyone visiting a ward will see this. Carers should have the right (not the duty; they often need respite) to stay with people with dementia in hospital, just as parents do with their sick children. They should be welcomed, not just because it is an obvious matter of compassion and moral common sense, but because it helps nursing staff as well as patients: nurses can nurse; carers can nurture, be the experts in experience, the cognitive ramp.

And over the brief life of our campaign – just four months – I’ve learnt how many hundreds and thousands of other people have the same story. Spouses and children have told us their own tales of heartbreak, guilt, rage and powerlessness, as well as stories of kindness and excellent practice. But more than that – nurses and doctors and charities have supported and helped us, and some (not all) politicians too. We are – in our tiny, single-issue way – part of a great paradigm shift. Times are changing. For a long time now the focus of health care has been on diagnosis, treatment and cure, but that’s no longer enough in our rapidly-ageing population. Person-centred and relationship-centred care is crucial – a system in which a patient is not just a collection of symptoms, but a person, precious.

Carers (about 700,000 of them, and rising) are the overworked, unpaid, unseen, unsung heroes of our society. They often don’t know they are carers. Out of goodness and love, they tend to people at the end of their lives. Yet hospital doors are often shut on them. The world is often shut on them, so that they are isolated and depressed. Of course, there are multiple practical measures that are urgently needed – increased allowances, changes in hospital policy, integrated health care, a properly funded NHS – but more than this we need to welcome carers, not just in hospitals but in society. People who live with dementia, and those who look after them, should be part of the great flow of life. And actually, that’s what our campaign is about.

This article was originally published in The King’s Fund’s Insight magazine, summer 2015.  ……..’

Top Ten Tips for Newly Diagnosed Families

Original  post from Autism Speaks

‘…………..This is a post by Autism Response Team Senior Coordinator Jodi Miller.

Your child has autism.  Now what? You’re part of a new family, a group of people you never planned to be a part of, a life you never planned for yourself, your family or your child.  Your mind is swarming with questions. Who? What? When? Where? How? Why?

Though you never dreamed of or planned for this, things do get easier. Life will be good – it will just be different. You will celebrate this different life and revel in all of your child’s achievements.

It won’t be easy. It takes hard work and patience. Luckily, you aren’t alone on this journey.  There are people, resources and organizations to help, but you will need a roadmap.

1. Get organized

Receiving an autism diagnosis can be overwhelming. Not knowing where to begin or how to move forward is difficult. Get organized. Focus and simplify. Buy a 3-ring binder, dividers and paper. Create sections organizing information (i.e. contacts, schedules, diagnosis, etc.). Tips and forms are available in the Autism Speaks 100 Day Kit.

2. Become a research guru

Learning about autism and treatment options will empower you to make decisions. Read, go online and see what others are doing. Contact hospitals, universities and organizations learning about research studies. Your involvement helps you and professionals understand autism. Resource providers like doctors and therapists are in the Autism Speaks Resource Guide. Tool Kits cover a variety of topics ranging from pre-diagnosis through adulthood. Our Family Services Community Connections newsletter covers many topics. Find information and other resources in Autism Speaks’ Resource Library. Research opportunities and information are also available at the Autism Speaks website.

3. Evaluate your child’s strengths and needs

You know your child best. Your input helps determine therapies and treatments. Evaluate your child’s strengths and deficits. Just like any individual, children with autism are unique. It is sometimes said that if you know one person with autism, you know one person with autism. People with autism have a variety of difficulties; they also have unique abilities and areas of strength. Identify strengths and hone in on them helping your child feel proud of their achievements. This provides motivation and support to learn and excel in other areas. Check out a list of autism characteristics and unique abilities in the Autism Speaks 100 Day Kit.

4. Understand insurance/insurance reform laws/waivers

Insurance plans, laws and state waivers are confusing. Treatment options for autism aren’t consistently covered by health insurance. Currently, 38 states have passed autism insurance reform laws requiring certain policies cover autism treatments although some aren’t subject to these laws. The Autism Speaks Advocacy link has information about state and federal laws. Use the insurance interactive tool to learn more about what your plan covers and check out tips and strategies to improve your company’s insurance coverage. The Autism Response Team has information and resources helping you contact your state’s waiver program to learn more about the services in your area.

5. Assemble your team

A team of people including yourself can help you make decisions about your child’s medical care, therapies, treatments and education. Your team will consist of medical professionals, behavioral, speech, occupational and physical therapists depending on your child’s needs. Tips for interviewing and screening your team are in the Autism Speaks 100 Day Kit. The Autism Speaks Resource Guide lists service providers and can be searched at a local level to find providers that are nearest to you.

6. Know your child’s rights

You are your child’s best advocate. Learn the laws regarding your child’s educational rights and types of school environments. Learn about federal and state laws and how to write appropriate educational goals for your child. Know how to seek legal help if necessary. Tool kits focusing on the IEP process, working with the school community and learning how to advocate are available through Autism Speaks.

7. Communicate and connect with your child through therapies and play

Find activities that your child enjoys. Adapted activities make your child successful. Many communities have adapted recreational activities like “buddy baseball”, “hippo therapy”, and sensory friendly theatre events. Planning activities your family enjoys helps you bond. TheAutism Speaks Resource Guide has information about community and recreational opportunities. There are several issues of Community Connections focusing on this topic.

8. Care for the caregiver

This is an important one! Parents must learn to take a break. Everyone needs refreshing and recharging. You deserve it and shouldn’t feel guilty doing so. You will be stronger and healthier and benefit your entire family. Spend quality alone time with other members of your family. Find respite care providers in the Autism Speaks Resource Guide and read ourRespite Care and Autism issue of Community Connections.

9. Network with other parents/professionals

Connect with parents and professionals that have walked this journey. They know what works and doesn’t and can make recommendations about service providers and therapies. Join a support group and share with others. Support groups are available in the Autism Speaks Resource Guide.

10. Know how to ask for help

Know how to ask friends and family for help and don’t be afraid to do so. Your friends and family want to help but may be hesitant for lack of knowledge. The family and friends support tool kits helps get them on board. Teaching others about your child and autism helps you feel comfortable and accepted and allows your loved ones to help.