CarersBlog

carersblog.wordpress.com

New Challenges, New Hopes for 2011

Note: The following first blog post of 2011 has been written by Carole Cochrane, Chief Executive at The Princess Royal Trust for Carers

I was extremely fortunate to spend the two weeks of Christmas away on holiday. After a scary drive to the airport my husband and I were delighted when the airplane was finally de-iced and we were able to take off leaving the snow and madness of the holiday season behind us. What struck me whilst on the holiday was just how many people were at the hotel who were obviously carers away with the cared for and in some cases the family.

There was a young mum Chrissy who was on the holiday with her 10 year old son who was severely disabled, Chrissy was also accompanied by her mum.  When her son had been younger she was offered lots of respite – more than she needed she told me.  However, now her son was older and heavier to carry respite was almost non-existent and she now relied on her mum and a few good friends.

Chrissy’s son is tube fed and the rucksack with the feed was constantly on the back of his wheelchair.  Chrissy told me that some airlines charge extra to transport the 25 kilo of feed she needs to bring away with her. She told me that the room they had been allocated was fully accessible and indeed they had selected the hotel and the resort on recommendation of its accessibility. Chrissy explained that the key to her getting away was planning, planning, planning and of course saving hard to pay for the break.

Chrissy’s mum was obviously incredibly close to both Chrissy and James but I couldn’t help wondering what will happen as she herself becomes older and not able to offer the support she currently does.

I got chatting to a young carer Elsa who was on the holiday with her mum who had suffered a stroke, like many young carers Elsa never strayed far from her mum’s side, always making sure she had everything she needed and I saw her keeping an eye on her, even when playing in the pool with other children.  They told me this was a rare treat and were trying out many new things to see how independent mum can become, because Mum doesn’t want Elsa to lose her childhood.  Thankfully, Elsa does attend a young carers’ project and is well supported by her school . They had been overwhelmed by the support of others who ensured they enjoyed the break, overcoming their own fears of how they would cope.

On the flight home I sat next to a couple who told me they had a son with autism who was now in residential care.  Clearly they were still carers even though it was different type of care to when he lived at home.  They told me they were really concerned about the  government taking away the mobility allowance for those in residential care as it was the trips out that their son most loved and calmed him down.

The holiday made me realise how lucky I am and how nice people can be, caring and looking out for each other. I also realised that whilst 2010 had seen some wins for carers, promises of additional respite money etc., if we are to get a fair deal for carers and those they care for then 2011 will be another year of challenges.

Advertisements

January 10, 2011 - Posted by | Benefits, breaks for carers, Relationships, Young carers | , , , , , , ,

21 Comments »

  1. For most Carers any holiday is prohibitively expensive. What is needed is more money for proper holidays away from home. This of course is now extremely unlikely to happen given that the government wants to reduce spending by at least 20% on all benefits. I suspect the scenes you witnessed of British Carers away on foreign holidays will all but disappear in the future, especially when 1 in 4 will lose their DLA and Carers Allowance plus all the passported benefits.

    Comment by ians12 | January 10, 2011 | Reply

  2. extremely fortunate and i feel most of the governments pledges regarding carers are pushed further n further into disregard as so few people seem to understand the daily lives of these people and the toil this in turn has on the carers own health, respite is a highly valued and much needed ‘commodity’ whether this be daily, weekly or indeed ‘holidays’ the needs and supposed rights of those in the caring role need to be higher on oir governments agenda

    Comment by Carron | January 10, 2011 | Reply

  3. Great observations of how it is possible to get away whilst needing to have carers with you and also highlighting some of the challenges that all carers face.

    It’s good to know that there are the facilities out there to help, but a shame to hear that some airlines are seeing this as an opportunity to charge extra. It’s not clear whether this is a budget airine that charges extra for everything or a main carrier that is being inflexible.

    Comment by Rob Osborne | January 10, 2011 | Reply

  4. They also charge for wheelchairs and bath hoists! It makes it impossible to use air travel because of what they see as “freight” charges.

    Comment by ians12 | January 10, 2011 | Reply

  5. We must carry on lobbying our MP’s to raise the profile of carers.

    Comment by Casdok | January 10, 2011 | Reply

  6. […] This post was mentioned on Twitter by Contact a Family, CarersTweets. CarersTweets said: New challenges, new hopes – First blog post for 2011… http://fb.me/DccdLYF7 […]

    Pingback by Tweets that mention New Challenges, New Hopes for 2011 « CarersBlog -- Topsy.com | January 10, 2011 | Reply

  7. After 24 years waiting for my wife to be bad enough for two major operations (TOTAL HIP REPLACEMENT) i was looking foward to getting some help with a holiday/break. My wife has had one hip totally replaced and the other one will be done on JANUARY 18th, an operation which can last 6 hours.
    I have not had a break or a holiday for nearly a year
    I AM TIRED
    I AM FED UP
    I FEEL DEPRESSED
    AND
    I DO NOT KNOW HOW MUCH LONGER I CAN KEEP GOING.

    The reason i have written this is to highlight the fact that this country – its people and its politicians are forcing CARERS to live on borrowed time and if something urgent and critical is not done to rectify this situation the a terrible result will flow from this callous show of total indifference to the 6 million CARERS of this country.

    Comment by Taras Kurylak | January 10, 2011 | Reply

    • Taras, sorry you have been left to cope alone, its typical of the NHS/GPs/SS.

      Looking on the bright side, hip replacements are usually successful ops these days and usually quite rapid recovery. So soon you wife will be able to get around much better and take the strain off of you a bit, maybe.

      Comment by ians12 | January 11, 2011 | Reply

  8. Hi all
    Thanks for all the comments – it’s good to know somebody has read it.

    Getting a break is obviously so crucial for carers. The Government has announced £400m over 4 years starting this April for the NHS in England to spend on providing breaks for carers. We know what happened last time so we have already started work on lobbying Primary Care Trusts to persuade them that they should use all of the money for carers. It’s going to be a struggle but we’re determined to make sure this money gets used in the way Government and Parliament want it to be – to help carers.

    We’ve also met with the Dept of Work and Pensions to highlight the harmful effects that some of their welfare reform proposals could have on carers, and will be pushing to make sure that carers are not included in the Universal Credit proposals and that a separate benefit for carers – Carer’s Allowance is retained.

    Thanks
    Carole

    Comment by Carole Cochrane | January 11, 2011 | Reply

    • Thats good Carole.

      What concerns me is that after making several FoI requests to several NHS sources there still appears to be no communication between the likes of Social Services, DWP, GPs, PCTs and local Carers organisations that would help to identify and therefore target more accurately the resourced you speak of.

      Its not clear how this money could get to Carers when PCTs have no record of them and no access to information either.

      Surely this needs primary legislation to make it compulsory for PCTs to identify adult Carers in much the same way they have a duty of care towards minors who are Carers?

      Comment by ians12 | January 11, 2011 | Reply

    • Thanks for your comment Carol,but i DO NOT THINK THAT THIS PRESENT GOVERNMENT AND THE PCT,s HAVE ANY INTENTION OF PASSING ON ANY MONIES FOR CARERS BREAKS.
      THE ONLY THING IN THE MINDS OF THE GOVERNMENT AND THE PCT,s ARE BUDGET CUTTING AND PROTECTING THERE OWN BUDGETS,UNLESS THE MONEY IS RING FENCED IT WILL DO NOTHING FOR CARERS.
      YOUR IDEAS ON DWP BENEFITS SOUND GREAT BUT THIS PRESENT GOVERNMENT IS DETERMINED TO DISMANTLE THE BENEFIT SYSTEM AND SEE CARERS REDUCED AND BEGGERED AS A RESULT.
      NOBODY WHO HAS ANY MORAL AND SPIRITUAL CONCERN FOR THE DISABLED AND THERE CARERS WOULD DO WHAT THIS PRESENT GOVERNMENT IS DOING.
      THE ONLY COMFORT I HAVE AT THIS TIME PRESENT IS THAT GOD WILL ONE DAY HOLD THESE PEOPLE TO ACCOUNT FOR WHAT THEY HAVE DONE TO THE DISABLED AND THERE CARERS.

      Comment by Taras Kurylak | January 12, 2011 | Reply

      • “THE ONLY COMFORT I HAVE AT THIS TIME PRESENT IS THAT GOD WILL ONE DAY HOLD THESE PEOPLE TO ACCOUNT FOR WHAT THEY HAVE DONE TO THE DISABLED AND THERE CARERS”

        I agree.

        Comment by ians12 | January 12, 2011

  9. It’s good to know that PRTC are pushing to keep carers from being included in Universal Credit. The Government mantra that working should always pay more than not working obviously doesnt apply to carers. We do the same work as carerworkers but we are not considered to be working.
    We are even considered to be Social Capital under the new personalisation agenda and yet we are paid a pittance if at all. We are the frontline of social care but our existence, should we be included in the Universal credit would be denied.

    And we really are the frontline of social care. My respite for example has been virtually non existent this month due to the snow, bank holidays,careworker absence due to illness or training days. But my husband has still needed 24/7 care. Who fills the gaps, me always me. And it’s not like i don’t provide the vast majority of care for my husband in the first place! When i asked the social worker if it would be possible to get a few more hours respite so i could look for part time work, i’m wrecked but the money would be helpful, i was told no chance.

    £400 million is not exactly serious money if you are talking in terms of carer choice re taking up paid employment, especially given recent Council cutbacks.

    And I must admit i will be very surprised if much of that £400 million given to PCTs for carers actually gets spent on carers. The NHS arent exactly enlightened on carer issues and PCTs are not accountable to the general public.

    But I am glad that PRTC are fighting carers’ corner on this. In the past i have been politically active but these days, like many carers, day to day survival is the name of the game. I hope i am wrong and that some of this money reaches carers.Keep up the good fight PRTC.

    Comment by Philippa | January 11, 2011 | Reply

  10. I’d like to echo Philippa’s point about it’s good that PRTC has been in discussions with DWP about the role of carers. It would be extremely short sighted of the government to remove help for carers.

    If there’s that choosemycare.com can do to help support on this, please contact us.

    Comment by Rob Osborne | January 14, 2011 | Reply

    • Perhaps the PRTC would be good enough to publish the minutes of that discussion with the DWP?

      Comment by ians12 | January 15, 2011 | Reply

  11. The best way is to make Politicians take over our role for a few weeks. They could even make a programe about it and see how they would manage living our lives.

    I am getting older now and by the time we succeed to earn a decent wage I will lose my Carers allowance. I have not been able to save for my retirement like many.

    I value the work anybody does to highlight the problems carers face but so far nothing has changed. It seems that although they recognise something needs to be done in truth with all the cutbacks we may be lucky to get a slight increase. Maybe we should all ask for our children, husbands or wives to be taken into care as many carers are tired and overworked by their responsibilites.I am very lucky that my daughter does not have complex needs and I admire the carers who look after their loved ones for so little apart from love.

    We should not have to fight for our human rights to be treated fairly.

    Comment by Faith | January 21, 2011 | Reply

    • “I have not been able to save for my retirement like many”

      Too true, and what retirement? I hear many muttering!

      Comment by ians12 | January 21, 2011 | Reply

  12. Like many. my daughter will still need my help well past my retirement age. Nobody seems to care about our lives.. We are supposed to have a life of our own but by doing that I would be letting down the person who I love so much and who has already been let down by the system a million times over.

    Where is that support? I have lived through the nightmare of so called support. I have been quoted as saying no service can provide.. How awful.. Did I really say that.. No!!!!!!!!!! all taken out of context and that is the problem when we fight. Our point of views are not even considered.

    They do what they want in the end and give nothing in return.

    That does not mean I will stop shouting. lol.

    Comment by Simone Farrugia Meiszner | January 21, 2011 | Reply

  13. ON tuesdayjan 18th my wife went into hospital for the second of two COMPLEX TOTAL HIP REPLACEMENTS. What the future holds for her i do not know. As for me my future is even more uncertain and to add to it all i have not had a break in nearly 12 months.
    I AM TIRED BOTH EMOTIONALLY AND PHYSICALLY
    BUT
    like all good Carers i will continue until some thing gives – PROBABLY ME.
    So how is all the talk of cuts and half baked political promises supposed to help me and my fellow 6 million carers.
    DO THE BANKERS AND THE MILLIONARES OF THE GOVERNMENT FRONT BENCH REALLY CARE TO DO ANYTHING OTHER THAN SPOUT MEANINGLESS WORDS THAT HAVE NO REAL SUBSTANCE OR HEART.

    DOES ANYONE IN THIS GREEDY GRASPING NATION OF OURS REALISE THAT THE COST OF REAL CARE ARE THE LIVES – HOPES – AND DREAMS OF 6 MILLION CARERS.

    IT WOULD SEEM THAT THERE “HUMAN RIGHTS” FOR EVERYONE ELSE BUT NOT CARERS

    IN THE NAME OF GOD WHEN WILL ANYTHING
    REALLY CHANGE FOR
    THE
    BETTER??????????????

    Comment by Taras Kurylak | January 22, 2011 | Reply

    • “IT WOULD SEEM THAT THERE “HUMAN RIGHTS” FOR EVERYONE ELSE BUT NOT CARERS”

      I am not a lawyer but it would seem to me that there is nothing in the Human Rights Act that does not apply to Carers.

      However, if the Con-Dems were to carry out their pre-election promise to look into a “Bill of Rights” for the UK then there may be some ground to be gained in lobbying for anti discrimination rules specifically designed to include classes such as Carers.

      Of course the Con-Dems track record on “pre election promises” is not looking too good at the moment.

      I hope your wife makes a full and complete recovery Taras.

      Comment by ians12 | January 24, 2011 | Reply

  14. […] her life to improving support for carers. I do mean dedicating her life. You will see from her previous blog that even when on holiday, the needs of carers rarely strays far from her foremost […]

    Pingback by Goodbye Carole! « CarersBlog | March 31, 2011 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: