Category Archives: Carers

Carers’ Rights: a Modest Proposal revisited

I  have written many times  about UK Family Carers  – and how little they are considered in our society (link here).

Over the last 13 years, I have been pretty angry on behalf of myself, and all the hundreds of thousands like me – and I have not needed to focus my anger on the right or the left. From the family carers’ viewpoint you are both equally guilty.  In a world where half the people tell us that ‘if you pay peanuts you get monkeys’  and the other half maintain that workers have very clearly defined rights – but refine the term ‘workers’ to exclude  representation or acknowledgement of many of those who work the hardest – family carers have   for years suffered a dismissive double whammy as  ideological form outweighs any consideration of content..

An estimated 6.4 million people in the UK  provide unpaid care to those they love and they are saving the UK economy billions every year – more than the cost of all social care services and all private providers combined.

How many billions exactly? it is hard to estimate – but if you had to replace a full-time carer’s 168hours a week  at the Local Authority rate of £18 per hour  it would come to £157,248 a year. Without on-costs, sick pay, holiday pay or overtime. Most carers are not full-time – but well over a million are.

Many – indeed most – carers struggle with dreadful daily conflicts between work and care, and an estimated one million have had to give up work or reduce their hours, loses them an average of £11,000pa. And often a lot of freedom, companionship and self-esteem in the bargain. There’s a wolf at every carer’s door – and over 4 in 10 say caring has pushed them into the red. As money worries cause stress, its hardly surprising almost half of the carers surveyed said they were suffering from anxiety and depression because of finances.

It’s a big price to pay for love. Yet carers don’t expect to be thought of as noble: they do it because there are no other options . But it isn’t surprising that they would rather be thought of as the workers they are rather than the saints they are not.

These days,  while we could do with all the support we can get, family carers find ourselves once more at the mercy of the uncaring – those determined to make political capital out of our misery – scaring us with untruths, half-assertions and downright lies. (Amongst these I am particularly impatient with the Labour party in opposition, who, after 13 years being wholly careless of carers,  now suddenly and miraculously care frightfully for our plight. “Oo we doo care,” they moo. “Your problems are due to the Coalition cuts.” No they jolly well aren’t, you weasels. Our problems remain the same as they were when you held the purse strings – and I’d respect you a bit more if you admitted this) .

I’ve argued many times that the money spent on supporting carers was improperly focused. Carers live on the breadline – yet when respite care is funded it has to be in real terms and therefore  at a rate that would stagger one, considering how little the carers themselves are required to exist on. I’ve postulated that if this kind of money was ploughed directly into the carers’ lives rather than aromatherapy and sympathy and NHS Trust initiatives,  it might go further to help. Carers need circuses as well as bread: and what use is respite care if you can’t afford to do anything in your time away?

So what has happened? Someone listened!

The Coalition government  allocated £400million over 4 years and given directly to individual carers to give carers breaks. The rationale is, as the Chief Executive of the Princess Royal Trust for Carers puts it, ”Without these vital breaks, carers can often reach a breaking point where they can no longer continue, and their own physical and mental health deteriorates as result.” Yes.

Today I was offered a carers respite grant – the first sign in thirteen years of fulltime caring that the powers that be think of me as anything other than a draught horse or similar beast of burden. Thank you, Suffolk Family Carers. Thank you, Coalition government. Thank you, Paul Burstow, the man behind this allocation.

And I feel better already – it’s the thought that I have value as a person in my own right.

Please, if you are a fulltime carer, ask your local authority about this, NOW. Details on the iCare budget for carers in Suffolk are here


Of course this grant is lovely but there is much still to aim for  – there are not many people either on the political right or left who wish to acknowledge the extent of  family carers problems. Possibly because all past governments have been uncaring as to the carers’ plight.

On the right, there is a lot of head-patting and the suggestion that “if only the magic money fairy existed” all could be made better…but sadly the right don’t believe in fairies.

The left wing tend to refuse to acknowledge the situation at all, in case they might have to admit their past share of responsibility. Whenever I’ve mentioned how badly carers have always done under various governments,  certain types of people have refused to acknowledge this as a problem. They skate over the subject completely, returning instead to the iniquitous terms and conditions of various waged, pensioned, holiday-overtime-and-sick-paid employees.

It is clearly more comfortable for such people to argue the case – for example – that paid care workers are disgracefully badly paid. Which is incontestable – but hardly relevant comment to the plight of the unpaid person working a weekly 168 hours. (Yes, that’s what 24/7 caring is: 4.5 weeks work every week. On call, night and day, without let for years – decades, maybe. And all for a carers allowance of 33p per hour if you don’t earn anything else.) This isn’t a hardship, contest, folks. But if it were, unpaid carers would win hands down.

So what’s to be done?

I reiterate my Modest Proposal for Family Carers. And looking it I still don’t think its unduly expensive or ambitious. It is, however, just. As follows:

  • Ensure the state counts the Carers Allowance as a wage rather than a benefit, and awards it separately from earnings or other benefits(exactly as DLA was awarded to those who eligible) rather than clawing back sums in the long-established Scroogery that currently exists;

  • The government should further relax rules on other employment to allow carers the ‘luxury’ of being able to work, and have some non-caring life outside their responsibilities;

  • In return for the carers forgiving the government for giving them an allowance so much beneath the minimum wage , the the government should agree pay into the equivalent of an occupational pension for carers to accurately reflect (ok at minimum wage) the real hours spent caring. This could be established by reference to the cared for’s DLA returns and would give carers the prospect of a securer old age after all that work.

  • There should be a real and appropriate scheme set up to train carers for real , satisfying jobs when their caring roles (often sadly) end. This isn’t a luxury – it is a reward for all the unpaid work they have done without prospect of career advancement.

(I don’t think we can afford to do much about the European Work Time Directive or the sickness cover although, when this country was prosperous we jolly well should have tried to) beyond recognising and respecting those 168 hours on duty each and every week ill or well.

The bottom line still is that we rely on the love carers feel for those they care for to save the state the real cost of that care.

We, the people of the UK need to remember that Carers ARE the magic money fairy.

Tell me who else gives billions of pounds a year voluntarily to the state and expects so little in return?


Local care for local carers: Wickham Market finds a solution

More and more of the UK’s care problems are being picked up by family carers, but who cares for them? Quis custodiet ipsos custodes?

The government and the media and all the other movers and shakers may move shiftily and shake their heads despondently, but they come up with precious few answers.  I can tell them exactly how to move forward. Government and the media and all the other movers and shakers – you  just need to come and look at what’s happening in Wickham Market!

In this small Suffolk village the Wickham Market and District  Family Carers group  (a wonderful group of which I am proud to be a member) has created a trail-blazing solution to Britain’s growing care problem. In March, 13 volunteers from Wickham Market became  the first people in the country to qualify in an innovative scheme to provide local free trained respite care to local family carers!

Why? When the villages ‘s parish council saw local services struggling to meet the care needs of an ever-increasing older population, they recognised that it would be most practical to support the people who look after this population – the family carers. They also recognised that the single most important way of supporting these people was by giving them worry-free respite from their caring role. Their unique scheme ‘Local Care for Local People’ provides a pool of trained, accredited, insured – and most importantly LOCAL – volunteer carers, to respond to the present and future needs of people looking after loved ones fulltime.

After qualification, the volunteers carry on receiving  training, development and supervision. The knock-on effect is an improvement to employment opportunities for local people in our rural area . The scheme is therefore not only helping our local family carers, its contributing to the economic health of the community,” says the dynamic and diminutive Pam Bell, too modest ever to admit she is the brains behind this idea (she is). “Each volunteer has undertaken 56 hours of training by accredited trainers, 10 hours of assessed placements in residential care homes, plus course work. It a huge investment of time and effort for them to make  even before they start their volunteering role in the community. This is real commitment. From Easter 2012 we’ve been able to provide up to 100 hours per month of free support for family carers so they can take a break.  Our Volunteers are qualified, insured, CRB checked and supervised and each individual Family Carer can contact the volunteer they choose directly, no agency, no waiting, no cost!”

Family Carers are unsung heroes who, out of love, compassion, friendship, voluntarily care for another adult 24 hours a day, 7 days a week, 52 weeks a year, with little or no support or opportunity to take a break. They find it hard to do all sorts of things non-carers take for granted – to go shopping, to go for a walk, to meet a friend for a coffee – even get to the doctors or cope with an unexpected injury. The idea of doing something really positive to help them – training local people to become Local Volunteer Carers – was born from their plight says Sarah Owen Williams who is Wickham Market and District’s  Carers Support Group leader.

“Almost all support groups for carers are centred on the illness of the person they are caring for. Yet the problems that all carers face are very similar. Once we’d set up a group in Wickham Market to help any local family carer, we realised that respite was the key issue for all of them. And that we could make a real difference to their lives by training a bank of local people to provide short term respite care when emergency strikes. Or just when somebody wants a little time off from it all. Why should their love and public-spiritedness give them no private time? Pam adds.

When employed people talk about the stress of  their long working weeks, they need to remember that a full-time family carer is working a 168 hour week without pay, overtime, sick leave, holiday pay or an occupational pension. You can be called on any time of the day or night.  Indeed, I spent a terrifying and upsetting night in A&E ten days ago – unsure as to whether the relative I care for would survive the night (she did).  It may be  stressful running counties, countries or big companies  – I wonder if it is any less stressful being on call for years as the permanent link between life and death for just one single other person. You certainly don’t get paid at the same rate.

And on top of everything carers are always worrying about what will happen to their loved one if they have an accident or became seriously ill. I was knocked off my bicycle three years back by a man driving on the wrong side of the road.  He jumped out of the car to see if I was badly hurt.

And grazed and bruised I might be, but I had my priorities. I burst into tears and said If you had killed me, there’d be no-one to look after my daughter!

Nor was there. There are no carers for carers.

But now Wickham Market has made sure there are!

And if you don’t live in Wickham Market, or district? This scheme is unique – but we would be delighted to help other communities to replicate it in other parts of the country says Pam.

So  that’s all there is to it. Go thou and do likewise, why don’t you?

Councillors’ Expenses and the Cost of Caring

I’ve got to break it to you. I’m afraid I may have to start claiming some expenses as a County Councillor.

If you ever check up on such things you’ll know that I have claimed no expenses whatsoever for the last two years.

It’s been a (rather small-scale) point of principle.

Lets not get this out of proportion. You’ll be pleased to know that there isn’t a great deal that a county councillor CAN claim for at the best of times  – and this is as it should be.  But I have not claimed for travel on council business – even when Tory cuts mean that there are no longer buses running to get me home; I have not claimed for meals to sustain me on the days when I leave home at 7 and don’t get back till late;  the wreath I laid on behalf of Woodbridge’s war dead was paid for out of my own pocket – and on the odd occasion work has taken me to London I’ve stayed with friends rather than cost the hardpressed council-tax payer of Suffolk a single penny. I am a carer for someone who often cannot be left safely, but  even here I have used a patchwork of friends and favours to provide the required care. (Staff at Suffolk CC’s Endeavour House have been wonderfully supportive  on a couple of occasions when I’ve had real emergencies.)

Please note –  I don’t want to sound self-righteous, I’ve been making a point. I want to show up the contrast  between what is possible and what some others think it appropriate to claim for – legitimately – at a time of fiscal belt-tightening.

However, I’m afraid that care costs are becoming quite difficult – particularly as family circumstances mean that from September I will have no adult cover at anytime  during the week . So, as I said, I am thinking I may have to claim for emergency cover as and when I need it.

Now I think that being a full-time carer as well as a full-time county councillor makes me a better full-time county councillor – just as I think that being a county councillor who travels by public transport and bicycle will have a better understanding of the problems of rural transport than one who travels by car with expenses-funded petrol. It is also very important that the business of being a local councillor is not restricted to those who can afford it.

I suspect if there were more in my position representing you, some significant and important council decisions would have been different – and the outcomes for the people of  Suffolk might have been better.

If you have strong feelings on this matter – please contact me now -either by commenting below or by email/twitter etc

Whats happening in SCC – March

This last month at the county council   Cabinet decide to ‘remodel’ Adult and Community services – and seem once again to be relying on that good old standby – the volunteer – to sort out the inevitable gap in provision. Truly extraordinary that a mindset  that blandly declares that  ‘ you have to pay to get the best,’  and  ‘there is no such thing as society’ is also the one that is so keen to rely on others’ free labour and ‘the community’  for the really important things in life (like caring for the elderly and running public libraries).
This month too SCC started looking at the  proposed Suffolk Heritage organisation, which is set be run by the Museum of East Anglian Life  for the compelling reason that ‘they were the only organisation to tender for it’. Thank goodness it was a museum, eh? 

Remodelling of Adult and Community Services    At their last meeting,  SCC’s Cabinet decided to remodel Adult and Community Services in Suffolk.  They propose  that ‘the community’ will increase its dealings with  ’smaller’ care-related issues, while the County picks up cases needing ‘ more permanent care solutions’.  The proposals will now go out to consultation. There is as yet  little information as to how this  shakeup will affect communities, carers and those in care.

Apparently the SCC is running a trial in Felixstowe from 1st of April. 

Points of concern:

  • In the risk implications it states that “ACS has to deliver budget savings of £24m over 2012/13 and 2013/14, of  which £3.7m has to be delivered by 13/14 by reducing demand” Is this actually achievable?  The new plan is to to be fully rolled out across the County over the course of this year – yet SCC have only just started to consult. Is this possible?
  • An impact assessment  has already been undertaken –  yet it is too early to assess the impact of the model.
  • Is this another case where the administration intends to rely on volunteers to solve all the problems of  ‘smaller’ care-related issues? SCC seems to forget that the bulk of care is already undertaken by voluntary carers – the family carers (such as myself) who underpin the whole of social care by working upaid for 168 hours a week out of love. Working 24/7 as it is,  SCC needs to recognise that will not be possible to get them to work any more.

Consultation on the proposed Suffolk Heritage organisation. Many of the responses of the consultation concerning  the new heritage organisation were from members of the public,  however, a number of organisations also took the opportunity to respond. Many of  these had a number of concerns.

In particular, English Heritage stated that the proposals are not developed enough to enable a proper response, plus they raised many questions about how it might operate. They add  ‘It is worth noting that other authorities in the East of England have considered outsourcing archaeological services into a variety of trusts, and have not done so after further due diligence’.

Suffolk Institute of Archaeology provided a four page letter summarising their main points of concern about the proposal (finishing, rather glumly, by saying that ‘SCC is almost certainly going to proceed with the creation of the Suffolk Heritage Trust, so that, whatever individual views might be, outright opposition is likely to be futile and counter-productive’).  Their main concerns were:

  • SCC has not yet explored all the available options
  • In view of the number of serious questions that had been raised, the Suffolk Institute had serious doubts that a comprehensive and convincing full business case could be put together in time for approval in Spring 2012.  The process should not be rushed or avoidable mistakes will certainly be made.
  • SCC should not proceed with the Trust proposal unless it is prepared to ensure that the new organisation has adequate funding.

Suffolk Local History Council were very concerned about the viability of these proposals – ‘Suffolk is almost alone in seeking to cope with Government cuts by divesting itself of vital services (an approach rejected by Norfolk County Council and others)”.  

It is also far from clear as to what will happen if the  heritage lottery grant which SCC seems to be relying on doesn’t materialise. The people of Suffolk have not been given a plan B.

New CareAware Service in Suffolk Suffolk County Council have recently launched CareAware, a service which looks to help those people seeking financial information about how to fund long term care.  This service is not run by Suffolk County Council but a national not-for-profit organisation which offers free and impartial information and advice about later life planning and how to pay for longer term care.

 CareAware can be contacted on 08009540091 or emailed at

One month left to sign up for better broadband   There is only one month left for both residents and businesses to show their need for better broadband across the County before the deadline passes. The Council aims to get 10,000 residents or businesses to sign up, and you can sign up by heading to 

Mobility vehicles  As there is some confusion in Woodbridge and other local areas as to what rules govern mobility vehicles, where they are allowed and under what (if any restrictions) I have covered the subject very thoroughly on my blog -link here 

Just 42 I’m sure everyone in Woodbridge will be as pleased as I was to discover that our superb local  youth group was shortlisted for the High Sheriff’s Community Group of the Year award, and went on to receive a High Sheriff’s charity  grant at a ceremony in Bury St Edmunds cathedral last week. It is good so see their good work being recognised!

County Councillor surgery  My monthly surgery will take place on  Saturday 17th March, 10-12pm at Woodbridge Library

Street lighting: Just to remind everyone, the dimming/switching off of night lighting in Woodbridge will take place in the week beginning 26th March. Further finetuning can be then done on a light by light basis, so do please contact with any difficulties and report problem areas – if there are any!

Family carers need recognition as workers

Although local concerns about the closure of the Suffolk Respite charity are timely, we need to recognise that the problems family carers face are not primarily those of ‘frontline cuts’. They are the outcome of years – decades – of total neglect by  past governments.  Carers need more than charity – they need recognition as workers. I speak as a 24/7 fulltime carer  since the year 2000.

6.4million unpaid family carers in the UK save the UK economy £140bn every year. And for 24/7 care (a 168 hour week), they get a Carers Allowance of £55pw only if they are unable to work on top! Most carers struggle with dreadful daily conflicts between work and care, and a million have had to give up or reduce their hours, losing an average of £11,000 a year. There’s a wolf at every carer’s door – and over 4 in 10 say caring has pushed them into the red, with 47% being made ill by money worries. Their worries come, not only from lost earnings, but  because they face bills for special equipment, foods, medicines, transport, heating.

Its a big price to pay for love. Yet carers don’t expect to be thought of as noble: we do it in many cases because  that is the hand that we and the person we love and care for have been dealt.  There are no other options, or options that do not accord with common humanity.

We cannot always manage to be the angels we are not, so it isn’t surprising that we would rather be thought of as the workers we are. Yet New Labour, Old Labour, wet and dry Tories – no government has given a monkeys for the plight of our large but clearly politically insignificant group. For all the care past governments have had for carers ,we might as well have been a rural bus route!

On Nov 30th (Strike Day)I and the person I care for crossed a picket line for an essential (life-supporting) appointment. I asked the Unison reps why they were not striking to improve the lot of family carers.   As I pointed out to them : “Our terms and conditions include no occupational pension, no time off, no holiday, no sickness pay or cover, Health & Safety training and we have no recourse to the European Time Directive”,.

“We can’t represent you because you don’t work,” I was told. “But we care an awful lot for your plight..”


I have since been onto Unison to ask whether they would consider representing 6.4million of the hardest workers in the land to improve dire living conditions that a public-sector union should be breaking its heart over. So far, no response.

This is a slightly amended version of my letter to the EADT, 6/02/2012