The onslaught to carers and their families continues. Welfare cuts are starting to hit harder, bedroom tax, cuts to vital services, closure of Independent Living Fund. Benefits being changed all around and yet the lowest of them all, Carers… Allowance is once again ignored.

Iain Duncan Smith only ‘reformed’ those benefits that could be cut and/or criteria tightened. He has failed carers, many of whom will be hit with a double whammy if the person they care for loses the qualifying amount of Disability Living Allowance.

The whole safety net of SOCIAL SECURITY is being stripped away.

It may not affect you now but it could do.

PLEASE SHARE IF YOU CARE ABOUT THE FUTURE OF DISABLED PEOPLE AND CARERS.

WRITE TO YOUR MP

http://www.writetothem.com/

CarerWatch fully support Robert

I just started the petition “Create respite facilities to support disabled adults with life-shortening conditions aged 21-45″ and wanted to ask if you could add your name too.

This campaign means a lot to me and the more support we can get behind it, the better chance we have of succeeding. You can read more and sign the petition here:

http://you.38degrees.org.uk/petitions/create-respite-facilities-to-support-disabled-adults-with-life-shortening-conditions-aged-21-45

Thank you!

Robert

First They came ……

A mouse looked through the crack in the wall to see the farmer and his wife open a package.*

What food might this contain?’ the mouse wondered – - – he was devastated to discover it was a mousetrap.

Retreating to the farmyard, the mouse proclaimed the warning: There is a mousetrap in the house! There is a mousetrap in the house!’

The chicken clucked and scratched, raised her head and said, ‘Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it.’

The mouse turned to the pig and told him, ‘There is a mousetrap in the house! There is a mousetrap in the house!’

The pig sympathized, but said, ‘I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers.’

The mouse turned to the cow and said, ‘There is a mousetrap in the house! There is a mousetrap in the house!’

The cow said, ‘Wow, Mr. Mouse. I’m sorry for you, but it’s no skin off my nose..’

So, the mouse returned to the house, head down and dejected, to face the farmer’s mousetrap . . . alone.

That very night a sound was heard throughout the house — like the sound of a mousetrap catching its prey. The farmer’s wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught. The snake bit the farmer’s wife. The farmer rushed her to the hospital, and she returned home with a fever.

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup’s main ingredient.

But his wife’s sickness continued, so friends and neighbours came to sit with her around the clock. To feed them, the farmer butchered the pig.

The farmer’s wife did not get well; she died.

So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.

So, the next time you hear someone is facing a problem and think it doesn’t concern you, remember —- when one of us is threatened, we are all at risk.

********************

Sign  WOW petition here

To learn more about this petition please see full details on WoW website here

CarerWatch members are extremely concerned about the impact of the Welfare Reform Act on Social Care. Not just on those people affected now,  but those that will be in the future.  It is vital we take every opportunity to raise our voices about these issues to government.

See below for details received of a new campaign – Britain Cares

Received from Scope -

I wanted to let you in on a new campaign, Britain Cares – see website here

We all know how much support is being savagely taken away at the moment, but we think coming up there is a major opportunity to help get something positive to happen.

We believe that there is the potential for a big political moment to get the Government to address the growing crisis in social care for disabled people, with the Care and Support Bill coming into Parliament in May (one of only two major Bills) and the Government’s Spending Review brought forward to this June. We need to make a big push in April and May building up to June.

It could make a direct difference to the lives of more than 100,000 disabled people in this country through providing social care – but this campaign is also really about trying to galvanize wider public support for the rights of disabled people.

We want to take it to the Government and show them actually they’re wrong, many people in this country (disabled and non-disabled) believe in good, fair support for disabled people to live their lives.

At the same time, this campaign is about trying to show there are lots of people in Britain with shared values of fairness and freedom, and we want to live up to those values by making sure disabled people can live their lives like everyone else.

We want to challenge the Government by showing them.

There are two main ways to get involved:

- Upload a photo saying “I care!” or “We care!” at  www.britaincares.co.uk  where you can email it to your MP with a message

- If you have experience of the importance of social care yourself, please share your story with your MP – we urgently need to get them to understand more about the importance of social care against the backdrop of all the other cuts – further details to be found here

Please do have a look, it’s live online now and with a first big moment around 30 April,  to coincide with two All-Party Parliamentary Groups who will be coming out with their report on social care for working age disabled people.

If you’re interested and could help share/support in any way once it’s up and running, that would be enormously appreciated.

It’s not just a Scope campaign – other charities, organisations and others are getting behind it too, we want to make this as broad a church as possible.

You can contact Joe Hall at Scope for any more information or materials: joe.hall@scope.org.uk

To fit in with new research on the cumulative impact of April’s cuts, I’m currently looking for disabled people who are set to lose multiple benefits – and would be happy to share their story (anonymously if needed) for a possible article.

Will you be hit by the six major cuts?

They could be:

Contributory Employment Support Allowance

If you’re currently on low rate Disability Living Allowance – or perhaps are on a higher rate but have reason to believe you will not be elibible under PIP

Bedroom tax

Council tax benefit reduction/loss

Any other benefit cut/loss coming in this April.

If you are going to be affected by simultaneous cuts and are happy to speak to me please email frances.ryan18@btinternet.com (rather than leaving a message here as I wouldn’t want to miss your message).

Thank you very much.

• Thousands of disabled people will be hit simultaneously by up to six different welfare cuts
• Disabled people will lose £28.3 billion of support by 2018
• Up to 3.7 million disabled people affected in total
• Demos calls on the Government to publish the cumulative impact of multiple cuts to benefits
• Scope asks where disabled people fit in to Chancellor’s ‘aspiration nation’

for full details and the report, please see here

THE FINDLAY REPORT    was first published informally in 2006.

It was written by me and other family members and relates the experience that my 85-year-old father, James went through in trying to get appropriate care after he was diagnosed with Motor Neurone Disease.

It contains a day-by-day account covering four months detailing what was happening to him and the activities of health and social care services around him in the community, in a care home and in hospital where he eventually died. It also contains recommendations from us about how his experience of care could have been so much improved and enabled him to have had a ‘good’ end of life experience.

From the diagnosis of MND until my father’s death was just seven weeks. In those seven weeks we all lived a lifetime. They were weeks coloured by stress, problems, despair, feelings of helplessness, intense sadness and tears all because of the way that my father was treated, as well as what the disease was doing to him, the way my mother, Joan, who had dementia was treated and the way we, his children and other family members were treated. But it was a time that was also coloured by mounting anger. And it is the anger that is still driving my family and me on in pushing for the problems and solutions that we identified to be implemented not just locally with the care services where my father lived but also nationally as what happened to him can be multiplied many times over.

If you want proof of this then you only have to read the accounts of what happened at Mid-Staffordshire Hospital detailed in The Francis Report.

Mix this in with a general attitude towards the elderly in this country, that seems to range from indifference to contempt, then you have a potent mix. Just have a read of what Ann Clwyd MP has to say about what happened to her husband who died in hospital or the recently published Filkin Report called ‘Ready for Ageing?’

This hasn’t all just started in society generally or in the health service, it’s been going on for years. People decided to close their minds to problems while governments continued to just throw money at the NHS and then shut the door on it without going back to find out how things were going.

I always knew when THE FINDLAY REPORT came out that it would be a long process, that it would take years of constant pushing and persuasion by us to have our recommendations even listened to, taken seriously and then possibly put into practice. I know that it has been having an influence because of the numbers that my family and me have been distributing to people around the UK and abroad over the last 7 years, many of whom have been passing it on to other people – it runs into hundreds at least. This includes health and social care professionals at all levels; academics; government ministers, MPs and Prime Ministers; local councillors; civil servants in local and national government departments; officers in third sector organisations; government regulatory bodies etc.

Our report is still appropriate and copies are still being requested. I know for a fact from the feedback I have received from people who have read it that it is being used in training courses for future healthcare professionals studying at university and college; in palliative and end of life care nursing courses; quoted in research reports and books on issues around health and social care also as an example of service user involvement; used by professionals to help inform their day-to-day work on caring for people at the end of life. It has also helped to inform the work of the NHS End of Life Care Programme and the work of the National Council for Palliative Care (NCPC).

I am a member of the People in Partnership service user group at NCPC and a Dying Matters Champion. If you want to know what good palliative and end of life care should look like and how to ensure it happens then visit their websites at www.ncpc.org.uk  and www.dyingmatters.org

We will keep on going as a family with our Findlay Report. It’s a testament to my dad’s courage. Not a lot has changed in the 7 years since we published it and if it takes another 7 years so be it, and another seven after that, we will not waiver in our determination. We will continue to use The Findlay Report to try and improve attitudes and practices towards elderly care generally, whatever condition a person may have, as well as particularly to keep trying to improve the end of life care experience for everyone so that it is the best that it can be for the person and all those concerned about them.

Maybe the three F’s – Findlay, Francis and Filkin – together can provide a catalyst for change. It is possible – it just takes will and determination to want to do it.

Helen Findlay

March 2013

If you would like more information please contact Helen 

findlay.helen@googlemail.com

PDF version here -    THE FINDLAY REPORT

WORD doc version -  THE FINDLAY REPORT

************

Can we request that you share this report as wide as possible.

Thank you

.

There will also be an interview shown on Ch4 news at 7pm March 13th.

Please show your support throughout the afternoon by sharing these details as wide as possible. A few attending will hopefully be tweeting using hashtag  #ILF

I am Barry McDonald, I am 28 years old. I am a wheelchair user. I enjoy watching football and going out to the pub with my friends. I do a lot of volunteering around sports and improving services for Deaf and disabled people. I am ambitious as I have life goals I want to achieve: to be in a long term paid job, to move out on my own and to be in a position where I can be actively involved in doing all I can to improve services provided for disabled people and working towards a world that can one day be fully accessible for all.

I can’t do these things on the level of support I get from my local authority. I receive 45 minutes of social care per day for personal care. I receive nothing for domestic, social or leisure activities because my local authority will only fund support for basic personal care needs.

As a young person the hardest thing I find is not being able to go out and do anything, I can’t take part in the community, in training or work experience because I have no support to travel anywhere. I am also severely limited in chances to go out and socialise.

I am Chair of my local Disabled People’s Organisation but it costs sixty pound in taxis for me to go to a single meeting and when funding is tight that really limits the amount I can do. There are numerous events, meetings and trainings that go on that I can’t get to because there is no funding for travel. I would happily use public transport but I need someone to travel with me because I can only go so far in my manual wheelchair and I need support getting on and off buses and trains.

I have a taxi card which only gives me 8 journeys per month. Going into Bromley from where I live costs me two swipes of my Taxi card for a one way journey. So for one outing with my friends costs me 4 swipes of my taxi card plus my contribution which varies because it is a black cab and runs on a metre. It can cost me between £5 – £2, depending on the time I get the cab. It also means I get stuck places as I have accidentally used up all my taxi card swipes to get to a place and then can’t get home. The 8 journeys means two social outings per month. I also have a mobility car through my DLA. A friend uses that to drive me to football for Arsenal home games but aside from that I don’t have funding for support for anyone to drive me anywhere in it.

My life would be very different if I had been able to apply for the ILF. The ILF was good at leveraging local authorities to increase the care packages they were awarding so I would have got more all round. I would have used the extra support to move out of my family home when I was 21 years old. I would also have built up confidence to travel on public transport, being able to employ a Personal Assistant so I could go out and about. I would have been able to get to the courses and training I wanted to go on to qualify as Level 3 Sports Coach and I could now be working towards paid employment in my chosen profession. I would have support to go to the gym three times a week, improving my health and fitness. I could go on

holiday even. As a result of being able to do all these things it would have boosted my confidence and maybe I would be in a relationship by now.

Natassia and Petrell’s Story

Natassia is a 21year old young woman who lives at home with her parents in South Norwood, Croydon. She wants to live an independent life with choice and control over what she does and who she does it with. Her support package from the local Council is £175 per week. This is not enough to cover the support she needs yet the Council are refusing to raise it, giving her mother the only alternative of sending her to live in residential care.

Natassia has Cerebral Palsy and requires assistance with washing, dressing. She wants to be active and to enjoy social networks and get of the house so she uses her budget to pay to go to a day centre of her choice in South Croydon three days a week. This costs £141 and leaves little left in the budget for meeting her needs for the rest of the week. The Council say if it is too expensive from her budget she should choose to go somewhere else but other day centres in the area are full of older people who Natassia doesn’t relate to and aren’t appropriate. The cost of getting out of the house three times a week then means that there isn’t enough money left in the budget to pay for personal assistants to support Natassia get up, washed and dressed and her parents have to rise at 4.30am to do this. They are happy to do this on the weekend but they find it too much every day of the week.

The Council says that if this is a problem, Natassia should be sent into residential care.

This is despite the fact that residential care would be more expensive than raising the level of the personal budget Natassia receives, costing £225 in rent before any costs for support and personal care.

The family home has been adapted so it is accessible and meets Natassia’s needs. It is where she wants to live.

Had the Independent Living Fund been open Natassia could have applied for support to meet her full range of needs, to receive personal assistance support that allowed her to live with her family while allowing them to live their own lives while still being able to maintain her social networks and to be part of the community.

Jenny’s Story

Before I was referred for funding from the Independent Living Fund I lived without having my most basic needs met, spending hours unable to have a drink or go the toilet, without dignity and without any quality of life, existing between TV and hospital.

I received a package of 4 hours a day, one hour for getting me up, showered and breakfasted, one hour for house work and lunch, one hour for supper and one hour to do the “put to bed”. In between times I couldn’t get a drink or use the toilet- let alone do anything meaningful with my life. I even had one of the care workers bring her husband or (male) neighbour along as she was unable to get me in and out the bath by herself! I thought this was normal! I whiled away my days watching TV or falling asleep due to boredom. I used to be got up at 9 and put to bed at 9. I couldn’t even do shopping as it was quicker for the care worker to do it alone. I spent weeks at a time in hospital going from one health crisis to the next.

A chance meeting with a social care researcher led to me hearing of disabled people using “indirect” budgets to employ their own PAs. I was reassessed and awarded a 24/7 package partly funded by the ILF. I recruited a team of PAs who enabled me to actually have a life!

Through support from the Independent living Fund I have been enabled to go back to University and to enter employment, firstly through casual work as an “expert by experience” for the Care Quality Commission and to then go on to get my first full-time job in 20 years (as a Personal Budget Coordinator – the job of my dreams and my hobby to boot!).

I am paying into the system in 2 ways – as a Trustee of a charity – and as an economically active tax payer, thanks to my paid work. Additionally, 7 other people are economically active through their employment as my Personal Assistants.

In terms of saving money to the state you can also count on the fingers of one hand the number of hospital stays I have had since receiving ILF funding – and all but one of those stays were planned.

My ILF pays for a quarter of my care package – essentially 42 hours a week- and roughly the same amount of time that I spend at work, in education or taking part in leisure activities.

I can’t bear to think of a return to life without these opportunities.

Unfortunately in my job I see many people who are suffering the dreary lifestyle that I had once had as they have missed the chance to apply for ILF funding. One client says that she feels she is treated “worse than a dog – at least dogs get taken for a walk every day” – as she spends all but a couple of hours a week in bed. She doesn’t have a package flexible enough to have someone around to help her back to bed when her muscles no longer allow her to maintain her position in her wheelchair. The hour that she can spend in her chair, while the care worker is doing housework, she drives from room to room like a caged animal “just to make sure the other rooms are still there”!

I have no doubt that ILF funding would have made her life much, much better.

I am worried for the day that my 42 hours funded by the ILF disappear and I resort to driving from room to room, no longer able to pay for the support I need to lead the meaningful life I currently enjoy thanks to the ILF.

Help us stop the bedroom tax hurting disabled people

In a matter of weeks disabled adults and families with disabled children face a stark choice- pay more to stay in your home or leave.

From April, people living in housing association and council housing will be hit by the ‘bedroom tax’. Families judged to have spare rooms will lose on average £728 a year from their housing benefit, unless they can move somewhere smaller.

420,000 disabled people will be affected. This is because couples, where one partner has a disability, may need separate rooms. It’s also because many disabled children need their own room because of disrupted sleep or because they need care during the night.

The Government has recently been told by the Court of Appeal that denying disabled children their own bedroom is discrimination. But they are appealing that ruling and pushing ahead with the changes to Housing Benefit.

Please take our e-action  and tell David Cameron to stop and think. Tell him to stop discriminating against disabled people.