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Cumbrian Conference : A Microcosm Of Carer Problems Today - Carers UK Forum

Cumbrian Conference : A Microcosm Of Carer Problems Today

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Interesting report from the Cumbrian News & Star , 14 June 2017 , of a conference meeting involving local carers ( For once ).

Could be a report covering any such conference held anywhere in the UK ?

Surprise , surprise .... lack of finances / affordable support services to the fore.

Lack of respite, financial hardship and nowhere to turn in a crisis were just some of the issues being flagged up by carers at a conference in Cumbria this week.

One Carlisle carer described how he had ended up in A&E with his daughter five times last year because he had nowhere else to turn in a crisis.

The event, for unpaid family carers from across the county, gave them a chance to give honest feedback about the support they receive - or in many cases, lack of it.

Organised by Carers Support Cumbria, the organisation is now compiling a report based on the comments received during the day, and this will be circulated to politicians, councillors and those commissioning health and care services across the county.

The annual conference, held at the Daffodil Hotel in Grasmere on Monday, was organised to coincide with Carers Week.

The day-long event was attended by members of Carlisle, West Cumbria, Eden Furness and South Lakeland carers organisations.

The focus of the conference was to get feedback from carers about how their lives could be improved and what can be done by the Government, local councils and other organisations to help.

Issues that came up included more financial support, with many saying they worried about making ends meet. Members said the current Carers' Allowance of £62.70 a week was just not enough, and said the benefit stops once the carer reaches state pension age.

One carer said that when home care companies are charging over £17 an hour, it is insulting to those who look after family members for free - often caring for them day and night, seven days a week.

There were also calls to urgently tackle respite, with many claiming it is "non existent" in Cumbria.

Dot Barwise, of West Cumbria Carers, said the need for regular respite is one of the biggest issues that needs to be addressed.

She explained that in many situations carers cannot plan a break in advance because they can't reserve a respite bed, even if they can afford to pay for it. "Short term respite is really difficult to get, and you can't book it in advance. You have to ring up and see if there's availability. It means a carer can't even plan a holiday," she said.

"If you're with someone 24/7 you need that break away, even just so you have something different to talk about."

She went on to describe unpaid carers as the "most valuable commodity" in the NHS and social care. But she stressed that if they do not get the support they need now, they will not be able to carry on - and problems across the health and care sector will widen.

"Nobody plans to be a carer. You get no training and it can happen to you in the blink of an eye," she said.

"People sometimes have to give up work to care for someone and can get into difficulties financially."

West Cumbria Carers do offer a volunteer respite service, to help carers get out of the house for short periods. But demand is so high, it is currently over-subscribed. The same applies for their volunteer driver scheme, to help people get out to hospital appointments.

Another issue facing carers, added Mrs Barwise, is the lack of continuity in home care, with companies often sending out different staff at each visit. That causes stress for both the carer and the person they look after. "When it's not the same people coming you can't build up that relationship," she explained.

A Carlisle carer, who looks after his mentally-ill daughter, said carers are often left with to deal with a crisis.

The man, who asked not to be named to protect his daughter's identity, said on several occasions she has been suicidal and he and his wife, as carers, have had to decide what to do.

"When you need help in an emergency there is nowhere to turn. Five times last year we ended up in A&E because they wouldn't listen to us. My daughter was hysterical," he said.

"You wait four or five hours only to be told they can't do anything. Other times we've had to ring the police or ambulance."

Mother and daughter, Iris and Emma Summers, from Carlisle, care for each other. Iris has mental health problems and Emma has physical disabilities, so they both have very different needs.

Emma, 22, said she feels there is not a lot of support for young adult carers to unsure they can still build a career.

"I do not really think we've had much help from anyone. I don't think there are the funds available to do it," she said.

Iris added that when she had to go into hospital recently, there was nobody to care for Emma at home.

"She had to sit by my bedside because there was nobody to look after her. There needs to be something set up for an emergency. Someone who can go to before it becomes an emergency."

Looking after her mum has been emotionally tough for Emma, yet she said the waiting list for counselling is long.

Another west Cumbrian carer flagged up the rates being charged by care agencies, saying they can be over £17 an hour when the staff themselves only take home minimum wage.

She said that for those requiring 24-hour care, the cost can be a huge burden and puts more pressure on unpaid family carers.

Ellen Leeson, from Whitehaven, cares for her disabled son. She wants carers to be more closely involved in decisions about their loved ones care, as they are the ones who are with them all the time.

"You seem to be fighting the system all the time," she said.

There was also criticism of Theresa May's plans - dubbed the 'dementia tax' - to make people pay more for their care, with up to £100,000 being taken from assets such as property after their death.

Evora Bagshaw, a carer from south Cumbria, said: "It's the final kick in the teeth. You give everything then they are going to take all the money as well. We are trying our best to keep people out of care homes."

Ann Dukes, from Barrow, added: "We want people to listen to us a bit more. A little bit of extra money could improve quality of life for us and the people we care for. For working class people with only a certain amount of money it is very difficult. You are worrying about looking after the person, but also your financial situation as well."

Carers Support Cumbria is a consortium of carers groups in Carlisle, Furness, Eden, West Cumbria and South Lakeland.

It was set up in 2014 so that they could jointly bid for the contract to run assessment and support services across the county.

Mrs Barwise said although they are in touch with lots of local carers, there are more out there needing support.

"We are only touching the tip of the iceberg. A lot of people don't class themselves as carers," she explained.

Peter Canham, chairman of Carers Support Cumbria, called on Health secretary Jeremy Hunt to make carers a priority.

"Carers play a critical role in supporting relatives or family friends. Without them life for many people would be unbearable.

"The carer is often unseen, unheard and un-thought of by the larger population and sometimes funding groups. We'd like to raise awareness of that critical role. My message to Mr Hunt would be to please put carers higher up the funding agenda," he said.
Even Doctors ignore Carers, in my experience
And reception staff at hospitals.

They will just send a person with dementia from the X-ray dept to A and E for a four hour wait even though the carer is waiting for the patient. Mind you that hospital is in Special Measures.