CarersBlog

carersblog.wordpress.com

We need your help…

A sign with a question mark

We want you to submit your questions or comments for politicians

On 9th March we are hosting a roundtable in the presence of HRH The Princess Royal. Representatives of the three main political parties, including the Health Secretary, Andy Burnham, will be listening to the views of Carers’ Centres, carers and sector leaders and setting out their plans for carers should they be elected to government.

We’re interested in any question about carers and caring, but to remain impartial, your question will need to be one we can ask equally to all three party representatives.

We are also interested in very brief descriptions of a caring situation or problem that you think illustrates a challenge carers face.

The debate on social care has become extremely heated since we first planned this roundtable and we will be working hard to keep the discussion a measured and thoughtful one. We won’t be able to use questions that attack or praise a particular party or politician!

Please leave your questions in the comments section below.

Advertisements

February 24, 2010 - Posted by | General Election | , ,

62 Comments »

  1. At present, som Local Authorities are going out to tender for social care service, while other are encouraging individuals and carers in need of care and their carers to apply for Direct Payments and to manage the resources they are allcated themselves.

    Local Authorities state that by tendering for care services they aim to achieve Best Value. In fact, they generally achieve lower costs, but at the expense of quality and reliability of the care services provided.

    I think that many carers together with those who receive care would be very interested to know which approach is favoure favoured by each political party and why.

    Comment by Peter Senker | February 22, 2010 | Reply

    • Peter,

      All the main parties favour a combination of local authorities providing services directly, commissioning others to provide some services and providing personal budgets/Direct Payments for individuals to purchase services themselves. All main parties are keen to encourage personal budgets and contracting out of services meaning the local authority/Primary Care Trust (PCT) doing less directly itself.

      When a local authority/PCT decides that it will look for outside organisations to provide a service for them, it is becoming more common that this is done through a tender. I’ve heard Conservative MPs talk about the importance of maintaining local charities as service providers as part of their Big Society plan. Labour in government have issued guidance that commissioners should be involving local charities in planning and delivering service and Liberal Democrats at their Conference last year spoke of this too.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  2. I have been a FULL TIME CARER for my disbaled WIFE for 22 years,I would like to know,
    WHY I AM GIVEN CARERS ALLOWANCE,THEN THE ALLOWNACE IS TAKEN OFF MY WIFE,S INCOME SUPPORT.
    You gave BILLIONS to the BANKS, BILLIONS have been spent on the wars in IRAQ and AFGHANISTAN, but i and many like me are entitled to nothing.
    Oh and i forgot to mention the increases in MP,s PENSIONS,
    the MP,s who fiddled there EXPENSE claims……..
    I could go on but whats the point,you …….

    NEVER LISTEN, AND IF YOU DID REALLY YOU WOULD HAVE NEVER LET CARERS BECOME SO NEGLECTED AND IGNORED.

    THANKS FOR NOTHING.

    Comment by Mr Taras Kurylak | February 22, 2010 | Reply

    • Mr Taras Kurylak

      On benefits, Labour have not said anything about reforming Carer’s Allowance or benefits for carers.

      The Conservative said that they were especially keen to look at improving two things for carers regarding Carer’s Allowance – the amount carers can earn before they lose Carer’s Allowance and training rule/state pension?

      The Liberal Democrats have said that they would look at the recommendations from the Work & Pensions Select Committee report (Aug 08) which proposed increasing Carer’s Allowance, among other measures.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  3. I care for 2 people,My wife and my son,I have 3 other children,so you could say we are a one parent family with 2 disabled people to care for as well.
    The system only allows that I get payed carer allowence for 1 person.Can you tell me if they will address this problem or are they happy that one disable person is lost in the system and saving then more money ?

    My caring role is very complex,Having 2 people with very different needs + 3 other children’s developments to consider,and then have all the problem that the payment system’s have inflicted on me over the years and then to be shunned by friends,neighbours,social security …or said to be fiddling the system and having my money stoped..and to top it off not being thought of as doing anything…..It’s no wonder that some people never come forward to be identified…we are to bizzy ducking for cover..sorry 🙂

    Best wish and I hope you never have to use the system the way it stand now 🙂

    Comment by i care about carers | February 22, 2010 | Reply

  4. I have a 13 yr old son with Downs and Autism.
    I am looking for support for him to access the community without me. I am interested in someone who is interested in him as an individual and willing to put time and effort into developing his potential socially. So I don’t want a babysitting service or large group respite with other challenging children. Social services do not have the staff or resources to help and even if they did he would not be priority. I will not use services that my son does not benefit from as I will not get a break because of his frustrations following. Mostly I would like to be able to help myself but we don’t have any family to help.
    How are you going to improve this situation?
    Also is it possible to put autistic children forward as entitled to an orange badge as this would be one way of making things better.?

    Comment by Mrs Evelyn Griffin | February 23, 2010 | Reply

    • Evelyn,

      I think the main parties would suggest that their commitment to spreading the use of personal budgets in health and social care would give you more control of getting the services you want for your son.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  5. I am 67 years old and have been caring for my Daughter who has Downs Syndrome and a congenital Heart Disease (Eisenmenger
    V.S.D ) for 42 years. It is only in the last five years that I have some much needed support from the Social Services, this support is provided by Crossroads.

    If at any time Crossroads are not able to do a duty, I am not allowed to bank the hours that I am owed and use them another
    time, Social Services then say you have not used the hours, do really need them, its their way of trying to cut down on the hours of support they have to fund.

    I think this is unfair to me as a Carer as I am always tired and exhausted, and am only just managing to cope.

    What happens to the funding they save by not allowing me to bank my hours?

    Comment by Mrs Mary Dalziel | February 23, 2010 | Reply

    • Mary,

      This sounds terrible! Again, the main parties would say the solution is for you is to get the budget to manage meaning you can have the services when you want and not lose out if you decide not to take a break one week.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  6. Carers services are dependant on local authority and PCT budgets. If carers live in a poorer area, this means that they may not receive services for the person care for which can drmatically impact on their lives. As ever, the ‘postal code’ you live in determines the quality of life people have, carers losse out once again.

    Comment by Miranda De Blasio | February 23, 2010 | Reply

    • Miranda,

      Primary Care Trusts (PCTs) receive their funding from central government so their budgets are not dependent on tax raised locally meaning the wealth of that area should not impact upon the money they have to spend.

      Indeed, it may actually be that they receive extra money.

      Local authorities do raise a portion of their income from local taxation but the vast majority (about 75%) of their funding comes from national government grants. So, the wealth of a local authority should not be an overriding determinant of the quality of services that local authorities can offer.

      Local authorities do have freedom to choose how much they spend on social care and also what eligibility criteria they use to judge whether you qualify for support or not, which does lead to local variance though.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  7. I live in Wales. What will they do for Carers here?

    Comment by jane perkins | February 23, 2010 | Reply

    • Jane,

      Health and social care is a devolved issue to the Welsh Assembly, however, the UK Parliament does have powers over benefits, employments support, equality and human rights.

      There are no firm commitments to improve benefits for carers although Lib Dems and Conservatives have said they want to look at improving this.

      Labour have introduced the right to flexible working for carers, which the other parties support, and Labour’s Carers’ Strategy also has support for carers to get back into employment as one of its parts. – at least until 2011.

      However, none of the parties have explicitly said what they will do to continue implementing the Carers’ Strategy from Apr 2011 although they have all said they support it.

      Parliament did pass Labour’s Equality Bill just before Parliament dissolved which does protect carers from certain types of discrimination.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  8. i am the mum and the main carer of two disabled daughters…One is 16 the other has just turned 18.
    I have only recently received the right type of support needed for my daughters who both have Rett syndrome, numerous complex issues and with challenging behaviours. The type of support is right but not the number of hours.
    i have had to fight long and hard to get some support from social services and dont even have the luxury of having a named qualified social worker.
    I am caring full time for my daughters and ‘work 24/7 in giving them the best possible care i can ,yet am only entitled to ONE carers allowance…despite giving well over 200 hours a week to caring for them….
    as a carer we are NOT valued and the pittance we get in our Caers Allowance is a reflection on that!
    what has happened to giving Carers a Carers assesement?
    we only ever hear of these yet here i am 18 years down the line still waiting for one.
    what has happened to the Carers Grant??….ooops i forgot to mention its been given by our council to fund Crossroads…so where does MY carers grant go to when I and many others dont use Crossroads?
    Where is the training for parents of youngsters with violent outbursts and severe challenging behaviour. I have asked repeatedly for training on keeping myself safe and keeping my daughter safe during an outburst….keep being told its not our job to train parents….whose job is it??
    from a very let down and angry mum to two great girls who have been let down by the system.

    Comment by Mrs Mandy Mullett | February 23, 2010 | Reply

    • Mandy,

      It is exactly the role of local authorities and Primary Care Trusts to train carers to help them provide care.

      Government has repeatedly advised them of this – carers should be treated as expert partners in care meaning that carers get training and the support they need to provide care. The Carers’ Strategy is clear about this. Do you have a Carers’ Centre locally that could help you as many often provide training?

      Regarding Carer’s Assessments, carers have a right to request an assessment and local authorities should be advising you of your rights if you are or will be providing regular and substantial care. Complain to your councillor if you have requested an assessment and they refuse.

      Regarding not wanting to use the provider that the local authority commissions to provide that service, the main parties would answer that personal budgets would give you the choice to choose whoever you want.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  9. I jsut want to know why the standard of services is so dependant on the area in which you live, and I wnat to know why there are no facilities int the whole of Europe where we can take an adult with double incontinenece to be changed. That would be a huge help to the carer and would be more diginfied for the adult.

    Comment by Amanda McLellan | February 23, 2010 | Reply

    • Amanda,

      The standard of services is dependent on the area in which you live because local authorities have control of providing social services. However, Labour propose to create a National Care Service which would mean one set of eligibility criteria and assessment for the whole of England.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  10. My eldest son is 15, autistic, non-verbal and physically challenging. I am looking at the transition into adult services and it is frightening.

    The local day centres are closing – when he leaves school at 19 there will be nowhere for him to go to, to socialise with other people. He will always need constant support. I will have to arrange this from home, with support workers/strangers coming into my home and the added impact on my life and those of my other children. I doubt very much that I will be able to return to the teaching career I once had.

    Apart from the added stress and inconvenience of making my home a workplace, how will any future government ensure that there is a workforce there to support all the individuals being denied access to daycare centres and pushed into individual budgets managed from home? Will they be inspected to make sure that their work is up to standard, given that we are talking about the most vulnerable in our society? If the children’s workforce can be so heavily regulated to ensure their safety, will that also apply to vulnerable adults?

    I look forward to your replies.

    Comment by Nicola | February 23, 2010 | Reply

    • Nicola,

      You have raised very interesting points.

      A lot of my replies have said that politicians would cite personal budgets as solving problems but in this case, a dependence on personal budgets could cause you problems.

      We had meetings with all three parties in October on this issue to stress that there needs to be services core funded by local authorities/PCTs, especially as personal budgets are not appropriate for all and not wanted by all.

      All parties seemed to understand and accept this issue but I think more work needs to be done, especially at the local authority level, to make sure that a wide range of services for children and adults are available whether you want a personal budget or not.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  11. Why is the rate of carers allowance so low? As most people who are not carers calculate the carers allowance on a 40 hour week basis at £1.32 per hour totalling £53.10 per week. Whereas us carers work many more hours than that, usually 24 hours per day for 7 days a week (168 hours) this makes the hourly rate a grand total of £0.31 per hour.

    Most of us don’t choose to become carers, as it comes round from necessity when a family member is disabled and we have to give up paid employment to care for them.
    I have 2 disabled children and I have not been able to work for the past 10 years.

    The work we do as carers covers the roles of:
    Nurse
    Continence nurse
    Physiotherapist
    Occupational therapist
    Speech therapist
    Interpreter (for non verbal children)
    Driver for appointments
    Wheelchair repairer & adjuster
    Cleaner
    Cook
    Advocate for education & health matters
    Teaching assistant

    And the most important, but it usually gets ignored by others, a parent.

    All this, and I am STILL classed as “Unemployed” & treated as a lesser person because we have to claim benefits.

    I’m sure that lots of other people could add to the list of roles that us as carers do, as there is so much that I have forgotten to write down.

    Another thing that is very frustrating for us that claim carers allowance, is that the pittance that we get paid as carers gets calculated as income when trying to claim housing benefit, which means that the housing benefit is either a reduced rate or is not awarded at all.

    Comment by Suze Woodley | February 23, 2010 | Reply

    • Suze,

      I’ve given details above of what the parties have said about improving benefit support for carers. There is still a long way to go.

      Carers talk about the minimum wage and Carer’s Allowance. The explanation is that Carer’s Allowance is not a wage for caring but is an income replacement benefit for not being able to work.

      None of the parties say that carers should be “paid” for caring as a wage and the current benefit system means that receiving an income replacement benefit does affect other qualities you may qualify for. This is unlikely to change although the Work & Pensions Select Committee report (Aug 2008) does propose widespread improvements but the parties need persuading to act on these.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

      • “income replacement benefit” you say?

        In that case, can I have the ‘working tax credit replacement benefit’ too, since I have to care for 35 hours or more a week to qualify for carer’s allowance and work only 16 to get WTC?

        Comment by Nicola | April 28, 2010

  12. Despite Job Centre Plus recruiting Care Partnership Managers there is still very little flexibility in the training that carers can receive as part of the new program. The alternate care costs are inflexible and most carers are unaware that their local JCP can offer them any further support.
    Job Centre’s should be working in closer partnership with Carers Centres across the country to help guarantee support to those who do wish to combine work or training with caring, this will help carers with mental well-being, self-esteem, prevent isolation and income, it will also mean that carers will no longer be considered ‘economically inactive’. I would like to make it clear that carers should not be ‘forced’ into work, but supported into doing so if that is their wish.

    Comment by Daniel Bunker | February 23, 2010 | Reply

    • Dan,

      The pace of progress in setting up the extra support for carers via Jobcentre Plus (JCP) offices has not been as quick as we would like.

      I would like to see JCP staff actually going to Carers’ Centres to tell carers of the support they could get.

      I know that The Princess Royal Trust for Carers is speaking at a training day for Care Partnership Managers to increase their understanding of carers’ issues and there will be ongoing training throughout 2010 for JCP staff.

      I wholeheartedly agree that we should be supporting carers if they want to work as this is often key to them having a “life of their own”.

      All the main parties would support helping carers combine work and caring. Labour obviously have their programmes like the above set up as part of the Carers’ Strategy and all parties have talked about making sure carers know of their right to request flexible working.

      I think helping to keep carers in work deserves more focus, as well as improving training opportunities for those who want to get back to work.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  13. Hi,

    Thanks very much to everyone who has responded – we are reading your responses with great interest and noting down questions for the politicians. We’ll let you know which ones we have time to discuss on the day.

    Amanda – If I’ve understood your comment correctly, I think the Changing Places scheme of fully accessible public toilets for adults, which include full size tables and hoists, would be relevant. There are no where near enough of them of course, but you can find the 100 or so that do exist at http://www.changing-places.org and join their campaign if you wish.

    Alex

    Comment by Alex | February 23, 2010 | Reply

  14. I wonder how it is going to be possible to:
    make provision for millions more people to become cared for,
    increase the value of family carers,
    and make budget cuts?
    It’s a stressful role which if it becomes untenable for the carer gives the counrty an even greater burden.
    Kate Chate

    Comment by Kate Chate | February 23, 2010 | Reply

    • Kate,

      I think the words “nail on the head” could apply here.

      We have been campaigning for politicians to address the fundamental issues – more people will need care at home in the future, but families will find it increasingly hard to provide that care.

      We should never treat people as means to an end, but politicians have to realise that carers are actually our most valuable resource.

      They provide more care than either social services or the NHS.

      We should be investing in them to make sure they are healthy, properly trained and get regular breaks to help them provide the care that many individuals and we as a society rely on.

      Taking carers for granted actually costs us money because a failure to support them ends up in a breakdown with horrific ramifications for the person needing support, the carer and it also ends up costing more.

      We think the social care system needs reforming and at the heart of that needs to be support for families and friends to provide care.

      We were disappointed that Labour’s White Paper on social care did not include systematic support as part of a new social care system, although to be fair these were very broad proposals.

      We must push all parties to understand that if you want to build a society that carers, you must support carers.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  15. Once again I read these accounts of carers’ lives and feel ashamed and deeply angry that people are left to struggle in sometimes impossible circumstances without adequate resources and support. Once again I have to pinch myself and remember that this is 21st Century Britain. Reading Suze Woodley’s account of what her daily responsibilities are – and having identified similar lists of caring responsibilities with groups of carers over the past few years, the list of responsibilities really is endless and many of those tasks are really tough – I wonder if a job description were drawn up for “Carer”, where the rate of pay is at best around £1.32 ph, whether anyone would apply for the job. Wake up politicians the situation for many, many carers and their families is absolutely untenable and needs to change.

    Comment by Jill Pay | February 23, 2010 | Reply

  16. I would like to know how you can justify calculating the pittance of carers allowance on the child tax forms? Not only is the amount of carers allowance a total disgrace – come and live our lives for that money! But then it is calculated as income – and reduces my child tax to just about nothing.

    Also – I can’t get a carer for my son for less than £9.50 an hour – but i get the 31 pence – we are not valued at all.

    Comment by Laura James | February 23, 2010 | Reply

  17. seven and a half years ago i gave up self employed work to be a fulltime carer for my mother who was left paralysed by a major stroke, since then she has had several more strokes
    and now has dementia, apart from one carer from care uk who comes in every morning to wash my mother and crossroads who come in for 3 hours a week, i do all the caring on my own.
    so my mother has cost the state very little.
    i understand there is a proposed new tax ,im not quite sure
    of the correct name for the tax, but it is now becoming known as the death tax, i understand that when my mother passes away her estate will be liable to pay thousands of pounds in this new tax, some newspapers are reporting sums of £20000 tax, and those liable for inheritance tax will also have to pay that as well.
    my question is, is it fair for people like me who gave up work to look after a parent to be heavily taxed, especially
    as it is the son or daughter who had done the caring not the state. IS THAT FAIR.

    Comment by david nichols | February 23, 2010 | Reply

    • David,

      This is quite complicated but here goes…

      Labour proposed a new social care system for England. Currently, people with wealth (savings and property) greater than £23500 can be asked to pay for all of their care. People with wealth under that can get it all for free. This means some people pay a lot – £30k, £40k, £50k and more whilst others pay nothing.

      Labour’s Green Paper in July 09 had various proposals. One of these was that everybody on retirement would pay a set amount (approx £17k but it would vary with wealth) which would then mean that everybody’s social care needs would be provided free of charge. The “death tax” headline came from one of the options to pay this being from your estate after death. Labour then produced a set of proposals in March (White Paper) that supersedes these and how a new system would be funded would be investigated by a commission.

      One thing I will say is that we do not think it is fair that carers can provide carer that otherwise would have to be provided by the Government and would then be asked to pay the same amounts as other people. If there was such as a system where everybody had to pay something, we think carers, because of their caring contribution, should be asked to pay less.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  18. I would like to know from each of the leaders, how they would tackle the postcode lottery which is often used by NICE,I would also like to know if this will be the case in future years for social care. It has become eviedent, that it might happen as times get harder with more councils strapped for cash.

    Or will they fully fund care like in Scotland

    Comment by Anne Diamond | February 23, 2010 | Reply

    • Anne, Labour have set out their proposals for a National Care Service which would reduce the “postcode lottery”. The Lib Dems say that they are happy to work with the other parties to look at reforming social care to avoid these problems. Conservatives have been slightly critical of the Labour proposals although do think the “postcode lottery” needs to be looked at.

      Comment by Gordon | April 28, 2010 | Reply

  19. Quote:
    Family life
    You have the right to enjoy your family relationships without interference from the government. This includes the right to live with your family and, where this is not possible, the right to regular contact.

    ‘Family life’ can include the relationship between an unmarried couple, an adopted child and the adoptive parent, and a foster parent and fostered child.

    Also.
    Quote:
    Rachel Gunter (by her litigation friend and father Edwin Gunter) v South Western Staffordshire Primary Care Trust (2005)
    A disabled woman who required 24 hour care wanted to be cared for at home with her family, through an extensive care package. However, her local Primary Care Trust (PCT) wanted to place her in residential care due to the high cost of home care, and because of the higher quality of care in the residential care home in the event of a crisis. The High Court found that the PCT had not properly considered the impact of this on her family life. They had not taken into account her improved quality of life at home, or her own wishes to be placed at home. The PCT was therefore told to remake their decision, taking her right to respect for her family life into account.
    (Case summary provided by the British Institute of Human Rights)

    Quote:
    Respect for your private and family life

    It also includes your right to control who sees and touches your body. For example, this means that public authorities cannot do things like leave you undressed in a busy ward, or take a blood sample without your permission and this applies at home as well ( This must apply at home as well)

    Now my question is?

    People have a right to say who they want to provide care for them and nobody can be forced in to caring that’s fair however, LA’s and the NHS have a responsibility to Care and the National Home Care Bill is taking away that choice if they remove AA from everybody which would then make it compulsory for all.

    http://www.equalityhumanrights.com/human-rights/what-are-human-rights/human-rights-in-british-law/respect-for-your-private-and-family-life/

    Personal Home Care Bill 22/02/2010
    http://www.theyworkforyou.com/lords/?id=2010-02-22a.817.14

    Comment by entity | February 24, 2010 | Reply

    • Hi,

      The Personal Care at Home Bill, which was passed just before the election was called, does still allow people the choice of who cares for them. The only thing it changes is that for the people of the very highest needs who currently pay for any support, would under this Bill get it free.

      But they would still be able to choose who provided care and personal budgets would still be available. However, although the Personal Care at Home Bill was passed it is not certain that it will ever get put into practice – this is dependent on what happens after the election.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  20. If not for an election would these issues be getting as high a profile.Somehow I doubt it. All parties have known for a long time now about all these problems, but no action was taken.Now all that is happening is that they are tinkering round the ages.
    Carers do their best to care for those members of their families, and this is a responsibility discharged not just on their own behalf, but on behalf of society as a whole. Meeting carers needs, in terms of financial remuneration and lifestyle options should be regarded as an entitlement and not as a form of charity.No party as yet has presented real solutions for real problems.
    A ‘National Care Service’ already exists in the form of family carers.Unless the strong foundation they provide is fully recognised, any new system will eventually fail.
    Carers are vital to this country now and as people live longer, so they will be even more so in the future.

    ELDERLY/DISABLED AND THEIR CARERS NEED TO BE ASSURED THAT CHANGES TO THE WAY SOCIAL CARE IS FUNDED IN THE FUTURE WILL NOT MEAN THEY HAVE LESS SUPPORT AND FINANCIAL SECURITY.

    Question 1. How will each party address the needs of carers to ensure this does not happen??

    Carers work and they do not belong on JSA or ESA at any point in the future.So with Welfare Reforms…..

    question 2. can each party confirm that Carers Allowance will be left seperate from the main benefit system?

    Comment by Rosemary | February 24, 2010 | Reply

    • Rosemary,

      I’m going to take your second question first :-).

      The parties have not said they have any plans to withdraw Carer’s Allowance and have been asked about Carer’s Allowance repeatedly. Your first question is the big one. All of the parties say that they recognise the importance of carers to the social care system and that they want to increase support for carers.

      However, we must work very hard post election to a) push for social care reform and b) make sure that supporting carers is integrated with and fundamental to any new social care system.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  21. There are two very important ways in which my life as a carer could be improved. (Apart from the obviously desperately needed decent increase in carers allowance and the income support top up!) Firstly, my form of respite is to study courses with the Open University. As I already have a degree I can get no funding and have to scrimp and go without in order to pay for the courses. Surely it is within the realms of budgets to allocate extra funding so that all carers can get free OU courses at any level – OU is a lifeline for a lot of carers. Secondly, after 25 years of caring I am shocked that the NHS still uses malicious tactics against parents/carers who challenge medical opinion when it is wrong or negligent. Dare to query the medics and they immediately point the finger at you as a parent/carer. (eg – they spent fourteen years alleging I wasn’t feeding my daughter properly because I insisted that there had to be a medical reason for her small size – turned out I was right and they had known it all along. At fourteen she was the height of a three year old and the weight of a thirteen month old. I dared to challenge them again a couple of years ago and their response has been to bully and harrass us and tear our lives apart – apparently my daughter’s symptoms aren’t possible even though they have witnessed them and the dietary changes we have made, that relieve the symptoms and pain, have been classified by managers as putting her at risk – oh and apparently I put her at risk by sleeping occasionally!) Shouldn’t there be a system in place to prevent this from happening – the complaints system doesn’t work.

    Comment by Pat | February 24, 2010 | Reply

    • Pat,

      Could you speak to your local LINk or Carers’ Centre to argue your case for you?

      For info on LINks: http://www.nhs.uk/NHSEngland/links/Pages/links-make-it-happen.aspx which has information about your rights as a patient and carers. There is also a section on the NHS Constitution which sets out your rights and carers are mentioned in here. Regarding studying, we are campaigning for carers to receive greater support such as being entitled to reduced fees and also being able to receive Carer’s Allowance if they are studying, which they currently cannot.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  22. Please can you tell me, and more than 40,000 Carers in Wiltshire, why the Carers Strategy (and Dementia Strategy) money for Carers was not ring fenced for Carers? In Wiltshire the CEO of the PCT has publically stated that as not ring fenced he had no intention of spending it on Carers, and nothing anyone said would change his decision!! The PCT will receive even more money this year with none going to the people it was intended for!! I know that this is a national issue but there appears to be little beyond lobbying that can be done.

    Comment by Lulu | February 24, 2010 | Reply

    • Lulu,

      See our report and other information on this subject: http://www.carers.org/professionals/health/articles/nhs-given-150m-to-support-carers,5615,PR.html

      This is what I would do:

      1. Your council has an Oversight & Scrutiny Committee. You can ask them to investigate why the PCT is not spending the money as it was intended. This is happening in some council areas. Ask your councillor about this.

      2. Get your MPs (once elected) involved. Ask them to set up a meeting between the PCT, them and you or other carers/carers’ organisations

      3. Write to your local press! This was money earmarked for local carers and they appear to be missing out.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  23. how will each party ensure the carers strategy is implemented with ring fenced money at a level to make a real difference to carers lives not just sound bite tv or election false promises

    Comment by margaret adams | February 24, 2010 | Reply

    • Margaret,

      None of the parties support ring-fencing in principle.

      However, Labour said they will identify those PCTs not spending the money as intended and take action.

      Conservatives have been very strong on bringing up this failure in Parliament repeatedly questioning Ministers about it, as have the Liberal Democrats who have said they will “guarantee” carers £500m.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  24. hi, a question for your roundtable 9th march:

    what changes will your party make to encourage the removal of current restrictions on carers (receiving a carers allowance) to study or train?
    example: carers have a huge tool box ful of skills and yet to attempt to turn these skills into recognised qualifications through part-time study in addition to their caring role results in the loss of their carers allowance? these carers are strong, empathic and experienced individuals prevented from being academically qualified and recognised…even if many wish to work voluntarily

    Comment by helen ash | February 24, 2010 | Reply

    • Helen,

      This is a big issue for us.

      The Work & Pensions Select Committee advised for carers to be receive Carer’s Allowance if training or studying. The Lib Dems have said they would act upon the recommendations of this report but none of the parties have come out and said “we will change the rule”.

      I wish they would!

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  25. My sister has had severe M.E.for 22 years. I am 71 years old and her sole carer. There are more than 250,000 people with M.E. in the U.K. and a quarter of that number are severely affected like my sister. The lack of care and support for sufferers and their carers is a national disgrace. And why is there so little government-funded biomedical research into this terrible illness ?
    Chronic sufferers often become SO desperate that they commit suicide (as in the case of Lynn Gilderdale,recently covered by the media). How many more people will take their own lives before the government addresses the needs of sufferers from M.E. and their carers ?

    Comment by Sybil Harman | March 3, 2010 | Reply

  26. Hi,
    I am a person who cares for my wife for a long term who suffers from some type of severe OCD plus looking after kids.

    OCD is in the top ten most handicapping illness as calcutated by World Health Organization in term of lost income and decreased quality of life. the carer like me can be just exhausted and dried up, service is somehow very poor in tackling this area. OCD it not taken very seriously by NHS ,why? why not more resources been allocated and made available for research treatment? why not providing some form of education and training be given to carers to tackle this mental disorder ? in general, what can you do to improve the carer situation and their mental wellbeing specifically for those who care for severe mental disorder?

    Comment by Ahmed samih | March 3, 2010 | Reply

    • Ahmed and Sybil,

      I hope you don’t mind if I take your questions together.

      A big problem facing carers is that they do not get support because the person they are caring for has not been diagnosed or because it is not a physical disability it is assumed that caring duties are less.

      Supporting carers should be based on the support that they need and not what the condition is of the person they support. This has to change but is as much about changing local peoples views as national politicians.

      We need to work with GPs, hospitals, community health teams, occupational therapists, and social services so that the needs of the carer are being considered even if the person they are supporting does not meet eligibility criteria.

      Recent guidance has been issued advising this and as part of the Carers’ Strategy, widespread training of health and social care professionals on carers’ issue is and will be happening.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  27. In the light of the recent breakdown in discussions between parties on reforming elderly care in England & Wales, is there any likelihood of meaningful cross-party talks taking place, particularly when the Government is said to be considering a £20,000 compulsory insurance levy
    and how it will be funded?

    Comment by Carol Coyle | March 5, 2010 | Reply

    • Carol,

      The basic divide is that Labour think the best way to fund social care is by everybody paying something meaning that everybody will get it for free.

      Conservatives do not think there should be this compulsion on everybody to pay but that those who choose to get the benefit of free social care.

      There is a fundamental ideological divide on this issue between those two parties. The Lib Dems have not really made their position clear other than that they want to reform the system and will work across parties to do this.

      So likelihood? Depends on the election but it’s probably not looking like an odds on favourite.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  28. The incidence of mental illness is increasing. Many people are concerned, not so much about the plight of those suffering from mental illness, but more about their own safety. However when things do go wrong, carers very often say that things would not have got so bad if only they had been listened to by the mental health professionals.

    Can the politicians tell us what they will do

    (a) to ensure that mental health trusts adopt a policy in which all carers are treated as equal partners in the care of the mentally ill, and

    (b) to ensure that all staff, especially psychiatrists, are obliged to implement such a policy.

    Comment by Roger Warren | March 5, 2010 | Reply

    • Hi Roger, I’m getting a colleague on the case to give you a better answer than I could. I promise it wont be long – sorry!

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

    • I’ve spoken to my learned colleague who thinks that the politicians would answer that both the Carers Strategy, and New Horizons in mental health outline that carers should be listened to, valued and supported as partners in care. The three main parties’ manifestos are not fully developed on mental health:

      Conservatives: pilot a mental health follow-up service for those who have left the armed forces. Will support carers by ‘providing direct payments and improving access to respite care’ (p.59). Acclaims carers’ role.

      Labour: Celebrates carers’ role, but offers no new pledges. Aim to improve mental health care by offering 8000 new psychological therapists (part of Improving Access to Psychological Therapies initiative?) on p.35, and aims to improve soldiers’ mental health in partnership with Combat Stress.

      Liberal Democrats: Thier £500m pledge for carers and will use savings to fund mental health care. Improve access to counselling by continuing to roll out of cognitive and behavioural therapies.

      In terms of more detail, a number of mental health trusts are now putting together their own carers strategies (South West London and St George’s MH Trust, who my colleague is working with at the moment, is one example). This is in addition to Lcoal authority strategies in the same area. The National Mental Health Development Unit (top Mental Health quango for England) is working to develop best practice for commissioners.

      It’s fair to say that carers are being more recognised in national and then local strategy, but from a v poor starting point and this must be pushed and prioritised by local teams. There’s also the point about a need for carers support offered by frontline staff to be recognised by managers and Trust directors. Often mental health staff are told to support carers without being given any more resources to do so, nor the ability to log this work or measure the outcomes of it. This acts in many teams and areas as a(nother) disincentive to support carers, which must be overcome.

      Comment by Gordon | May 4, 2010 | Reply

  29. Well said Roger Warren. Carers and families of people with mental illness are both essential and mostly ignored and invisible. Great emphasis is rightly put on the independence of the person who is ill but when they aren’t able to make good decisions for themselves about getting help the families are in an impossible situation. The stress of knowing a family member is getting ill and not being able to get help for them has to be experienced to be understood.

    There is no public health campaign about mental illness so that in general people don’t have the normal awareness they have of other illnesses and can’t support and help. Families who haven’t met this before don’t know how to pick up on early signs. This is appalling when one in a hundred young people will develop a mental illness. If the families do suspect mental illness getting help is often almost impossible. And as for support and rapid response later when things get difficult – forget it.

    The whole approach to the care and management of severe mental illness needs urgent open debate. This can’t continue to be a dark secret suffered behind closed doors and feared by the rest of society. Ignorance breeds fear. Alzheimers is quite rightly coming out in to the light – severe mental illness needs to follow.

    If Roger and others would like to think more about these issues then please contact CarerWatch and we could try at long last to get this debate up and running.

    http://www.carerwatch.com
    admin@carerwatch.com

    Comment by frances carerwatch | March 6, 2010 | Reply

    • Its not specifically for carers, but for all people in England (because of funders) there’s http://www.time-to-change.org.uk – Time to Change is England’s most ambitious programme to end discrimination faced by people who experience mental health problems.

      Their information is useful for friends and families, and helps to raise awareness. You say one in 100 young people may develop a mental illness – it’s actually nearer to 1 in 4.

      I attended one of their roadshows last year. A lot of families and friends came onto the stand to have a chat about the difficulties they face. Do take a look and get involved.

      Comment by km | March 9, 2010 | Reply

    • Thanks a lot for your comments on carers of people with a mental illness. We will be taking these forward in our continued policy and lobbying work on the government’s New Horizons programme (see http://www.carers.org/articles/new-horizons,4932,CA.html for more details of this programme and our position).

      Comment by Gordon | March 9, 2010 | Reply

  30. We in Chill4us have it planned for a Conservative Candidate to spend a day in the shoes of a Carer. I think he intends to visit 3 carers in their homes.
    We feel strongly that this is the only way Members of Parliament will see some of the difficulties that carers face.
    Why don’t they consider instead of having meetings, to actually share a carers life and feel what it is like. There are many different kinds of caring, so isn’t it important that they get to the grass roots if they wish to try and help us. Anyone can become a carer in an instant, even an MP.

    Comment by Wendy Chill4us | March 8, 2010 | Reply

    • But of course an MP would have money to arrange for care whereas most carers have financial issues on top of their caring concerns. All of US carers know what a nightmare it is, but I often wonder if MP’s have any idea what a lonely minefield it is once someone becomes a carer.

      Comment by Wendy Chill4us | March 8, 2010 | Reply

  31. Hello

    I would like it explained to me why, as I am in receipt of my State Pension now (I am 62 later this year) at £75.50 per week, this State Pension is considered a benefit, as I have been paying contributions all my working life; and thus, I am not entitled to the Carers Allowance. Especially with the increase in the cost of living as it is, I find this very unjust, I moved in with my 88 year old Mother to care for her f/t 13 months ago, as she is unable to live and cope on her own due to frailty, arthritus and memory loss.

    My health is not good and has deteriorated over the last year because of my caring role, which just makes the financial problems even more of a problem.

    If you are not well and feel constantly under pressure and have to struggle with finances it is obvious your caring role will suffer.

    There are many many carers who are in the same situation, who is going to help us?

    Comment by Anne Yavary | March 8, 2010 | Reply

    • Anne,

      Every time I speak to carers, this issue is brought up.

      This is what the Government says:

      Carer’s Allowance is an Income Replacement benefit i.e. given to somebody because they cannot work. In this case it is because they are caring.

      State Pension is also an Income Replacement benefit that is given to somebody because they cannot work – in this case because of their age.

      Now, as both benefits do the same thing (replace lost income through not working) then the logic is that you should only get one, and that is the higher one – State Pension.

      A lot of carers feel that they recognition as a carer is taken away and that it is unjust. Labour have not said they will amend this.

      Conservatives have said this is one of the two things regarding Carer’s Allowance they would give particular attention to and Lib Dems have said it is one of the things they would look at.

      Gordon

      Comment by Gordon | April 28, 2010 | Reply

  32. I’d like to know how anyone can live on state pension or even carer’s allowance,when the price of gas and electricity is so high, thats without food,any unexpected repair bills,much needed telephone bill,They have the cheek as well that even after death there after your hard earned savings,if your lucky to have any left that is.The government should have at least a weeks go at caring and living on normal people’s money,

    Comment by A.Norman | April 29, 2010 | 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: