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Carers Direct

The carers blog is written by carers or those working to support carers of adults and children with long-term conditions such as dementia, stroke, mental illness and physical disabilities. To join the bloggers, email talk@nhschoices.nhs.uk.

• 

  Autism Act 2009

  by Deborah Packenham on 22 October 2009
  
  “

  I'm really excited today as I have just heard that The Autism Bill has made it through its final parliamentary stage and will now become the Autism Act. The Act is the first ever disability-specific law in England.

   

  The Autism Act will guarantee the introduction of the first ever adult autism strategy, which will set out how local services should be improved to meet the needs of adults with autism. 

  The strategy will cover a range of issues including health, social care, employment and training and, crucially, will be accompanied by guidance which places a legal obligation on local authorities and NHS bodies to meet certain requirements.

  The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

  ”
  Filed under: autism

  Leave a comment
• 

  Don't Write Me Off

  by Deborah Packenham on 15 October 2009
  
  “

   

  The National Autistic Society has launched a new campaign Don't Write Me Off http://www.dontwritemeoff.org.uk/.

  It has left me wondering about when the time comes for my own son to start looking for employment and what support may be available to enable him to achieve this.  Sadly, I hear all too often from people with autism/asperger syndrome how desperate they are to find work and want contribute to society but don't know where to start.  I do hope the campaign helps raise awareness and understanding in this area and that some major improvements are made as soon as possible. 

  ”
  Filed under: autism

  Leave a comment
• 

  Video: Long-distance carers

  by Caspar on 07 October 2009
  
  “

  Gillian talks about being a long-distance carer for her mum, engaging with social workers and support services, and the importance of being organised

   

  ”
  Filed under: Carers, Video, caring, long-distance

  Leave a comment
• 

  Consultation For The Adult Autism Strategy - Last Chance to Take Part

  by Deborah Packenham on 11 September 2009
  
  “

  The Government is developing the adult autism strategy for England after the NAS I Exisit campaign found at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help.
  
  The Closing date for the consultation is Tuesday 15th September and the strategy will be delivered at the end of the year.  It aims to address the barriers which leave people with the condition feeling isolated, ignored and unable to get the help they so desparately need in five key areas: social inclusion, health, employment, training and choice and control information.  Please take the time to visit  www.autism.org.uk/dhstrategy.  We all know one of the hardest things for carers is the dearth of support for those that they care for - 40% of adults with autism live at home with their parents and it's of great concern to parent/carers what will happen when they're no longer around to care for them.  The strategy could make a huge difference to the lives of adults with autism and their carers...

  ”
  Filed under: autism

  Leave a comment
• 

  Simplifying benefits claims

  by wendy1 on 11 September 2009
  
  “

  Why aren't claimants informed of benefits they might be entitled to. Sometimes being entitled to one benefit means you could possibly be entitled to another, say DLA and AA or DLA and Carers. Why do they not inform people of extra benefits available to them. Also a friend of mine has Parkinsons and because he didn't know the system (he had a good career before Parkinsons) it took him two years to get things sorted. I think health care workers should be aware of what benefits are available and let patients know to save all the hassle my friend had to go through.
  
  A carers package delivered to a carer when they become one and the same for any claimant for any benefit?  This could be done with cooperation from Doctors, societies for the various disabilities, and charities?
  
  In other words, delivered at the sharp end when a need is identified!

  ”
  Filed under: DLA, Benefits, Claims, AA

  1 comment
• 

  Back to school

  by Sam_S on 09 September 2009
  
  “

  It's that time of year again and as someone who cried at their child's first day at school yesterday I can understand the apprehension that this time of year can bring!

  On www.youngcarers.net our young people are heading back to school - for some of them it's a relief to get away from the pressures of home and to be able to see their friends, return to a routine and forget about their responsibilities for a while.  For others it's less easy - they may be returning to an environment that doesn't support or understand their caring role, or may not even know about it!  There is much that schools can do to make things easier for young carers by asking the right questions, in the right way and at the right time and then following up whatever support needs are identified.  Our young carers tell us that having an understanding teacher and some leeway when things get hard at home really can make a huge difference to them.

  And on www.carers.org we see the other side of the coin - the parents of children and young people who have disabilities and who may be helping those children adjust to new routines or new schools.  It's never easy but particularly for parents of children for whom routine and familiarity is important this can be a very stressful time and a good school escort or member of support staff can ease this process for everyone concerned.

  So, I'm hoping that whether you're a young carer or a parent carer that this week or two goes well for you!

  Sam

  ”
  Filed under: young carers, school, parent carers, disabilities

  Leave a comment
• 

  Summer Holidays Over

  by Deborah Packenham on 08 September 2009
  
  “

  Most of us I know will be breathing  sigh of relief that the long holidays have now come to a close.  It seems like it lasted forever for me this year as my children had nine weeks off.  I'm sitting here this morning having a nail biting time as my youngest son who is diagnosed with ASD started at our local mainstream secondary school and all sorts of things are going through my mind, will the support be in place and will he be happy - we will soon know if it went well or not by his behaviour when he gets home.  It's been an exhausting nine weeks trying to find things to occupy him with but we were extremley lucky to be offered a weeks family holiday from the local Carers Centre after being on the waiting list for five years.  This provided a little bit of respite as there were lots of activities laid on together with a number of care workers to take them off our hands for a bit.   Play schemes for young people with ASD are very few and far between often with long waiting lists.  Its been very hard to get my son off the X Box and motivated to get dressed and come out with us over this Summer and it's really a bit of respite to have him go back to school - at least until October when holidays and stress begin over again.

  ”
  Leave a comment
• 

  Where is the respite care for carers?

  by Sam_S on 10 August 2009
  
  “

  Recent research by The Princess Royal Trust for Carers, CarersUK and Crossroads Care is showing that a shocking 35 Primary Care Trusts are not currently spending any of the monies allocated to them by the government for breaks for carers on that purpose http://www.carers.org/news/trust-calls-for-primary-care-trusts-to-fund-respite-breaks,4930,NW.html

  It got me thinking about just how vital this service is and how many carers must be missing out on the breaks they so often need.  How many carers are struggling along day after day without a break in order to get rest and a few days break?  Most of us take our holidays for granted, even if all we do is stay at home and catch up on jobs - to be undertaking the same caring tasks, day in day out, with no break for months on end is not what carers need or deserve.

  Let's hope this campaign to get PCT's to spend their money on respite for carers has an impact!

   

  ”
  Filed under: respite care, Princess Royal Trust for Carers

  1 comment
• 

  Carers grants

  by wendy1 on 05 August 2009
  
  “

  We received the final cheque today for our members who live in Norfolk  they had applied for the carers grant of  last year.  We sent our applications in February and received the payment in August.  At the beginning we were told that they wanted to use the money before the start of the new financial year in 2009 - April.
  
  Strangely another carer across the other side of the UK has finally agreed to meet someone to apply for a carers grant.  It has taken her years to pluck up the courage to do this.  Her feelings after the event were that the two women who visited her did not listen and were more interested in saying she could have the money and that would be the end of it.  What a shame they did not listen to see what was really needed.
  
  I am busy making arrangements for a parliamentary candidate to spend a day in the shoes of a carer.  I expect it will take place in September now.

  Chill4us is now on twitter.
  http://twitter.com/Chill4usCarers
  Do take a look.
  
  Tomorrow it will be our forums 4th birthday and with our first forum which was for carers, it will be seven years that we have shared our websites for carers and support one another through the good and the bad times.
  
  Wishing you well.
  Wendy

  ”
  Filed under: Twitter, Carers grant

  2 comments
• 

  The team expands!

  by Sam_S on 04 August 2009
  
  “

  It's an exciting time in the Web Services Team as we've got two new people joining our team this week.  www.youngcarers.net has always had two members of the team running it, moderating the chats and supporting the community of young carers.  Now we've doubled in size to four of us whose job it is solely to develop services and enhance the communities on both www.youngcarers.net and www.carers.org!

  This means that we have much more time to devote to finding out what our community on carers.org wants from the site and putting it into place.  So, once our new workers are trained up we'll be raring to go!

  ”
  Filed under: Carers, young carers, online

  Leave a comment
• 

  Supporting carers online

  by Sam_S on 23 July 2009
  
  “

  Hi,

  My name is Sam and I work for The Princess Royal Trust for Carers, working with both adult and young carers from all over the UK.  We have two websites - http://www.carers.org for carers over 18 and http://www.youngcarers.net for young carers under 19.

  Both communities enable carers to make contact with other people in similar situations to themselves and we know how important this can be to reduce the isolation that many carers feel.  We also provide information on a host of topics that are of use to carers.

  This week on our communities has been a very busy and exciting one!  We have launched ourselves into the world of Twitter so that we can provide followers with quick, helpful updates on items of interest to them - you can join us too at http://twitter.com/CarersTweets.

  We also hosted a summer party in our chatroom for young carers where, led by our team of friendly youth workers, our young carers took part in a mixture of games and competitions and even shared imaginary midnight snacks and hot chocolate!  Lots of fun was had by all...

  Tonight ( Thursday 23rd July ) we are joined in the carers.org chatroom by disability rights activist Eve Rank http://www.carers.org/news/disability-rights-activist-joins-carers-for-online-chat,4823,NW.html so we hope that we'll be able to find out more about the work she does and issues for adults with disabilites and their carers.

  I'd be interested to hear any comments from carers on here about what you think web based services can offer you and what the important issues are for you and hopefully I'll be back on here soon with more news!

  ”
  Filed under: Carers, young carers, The Princess Royal Trust for Carers, Twitter

  5 comments
• 

  Introduction

  by Deborah Packenham on 21 June 2009
  
  “

  Hello my name is Deborah Packenham and I am the National Autistic Society (NAS) Branch Officer for the London Borough of Barnet.  This is a voluntary role which I have undertaken for the past few years. Prior to that, I have been an operator for the NAS Parent to Parent line - 0800 9 520 520 - which is also a great way of talking through issues you might be facing with people who actually understand what you are going through because they have more than likely been there themselves.

  I have three children including a son who is diagnosed with High Functioning Autism.  I wanted to start a discussion around the issues facing carers and siblings and generally our day to day trials and tribulations that we face when trying to access care and support.  There is an abundance of information on the National Autistic Society website around these issues but I thought it might be good to talk to other parents/carers and share our experiences and knowledge so I am very much looking forward to hearing from you.

  ”
  Leave a comment
• 

  Video: Julie's story

  by Caspar on 15 May 2009
  
  “

  Julie became a full-time carer when her husband and her mum were both diagnosed with Parkinsons disease. She describes how this affects her own health and her social life, and where she found help.

  ”
  5 comments
• 

  Hello- I'm new here

  by Kerry Page on 12 May 2009
  
  “

  Hi all, have just agreed to become a 'blogger'- I didn't know what it meant until then!

  Anyway may I introduce myself first: My name is Kerry, I'm married to a wonderful man,  I have 4 children between aged 20 and 10. My youngest two boys are both severely disabled (Fragile X Syndrome/autism and stuff). I am just about to finish my 3rd year at full time university where I have been studying for a degree in Health and Social Care (2 weeks to go) and I'm being very naughty and taking a day off revising today!

  I hope to get a job eventually working with carers; supporting them, fighting for our rights and so on, that would be my ideal anyway. But first I have to learn Welsh and complete the final part of my ECDL (European Computer Driving License) which has proved entirely useless but never mind.

  Before all this, I will be catching up on a few things which have gone by the wayside. And spend some valuable time with my boys.

  So hello everyone, that's me!

   

   

  ”
  9 comments
• 

  Wendy of Chill4usCarers website

  by wendy1 on 06 May 2009
  
  “

  Hi,

  We decided on our forum that we would take this opportunity to speak about when services went well or became difficult for carers, so look out for our posts.

  Wendy

   

  ”
  9 comments

• © Crown copyright 2009.