Alarming number of carers sacrificing own health by putting off medical treatments

This year, carers and young carers local support services across the UK are holding events for Carers Week from 18 to 22 June. Carers Week 2012 will be focusing on the wellbeing of carers with the theme “In Sickness and Health.” Carers Trust is one of eight Carers Week charity partners .

The results of a new nationwide survey of 3,360 carers, carried out for Carers Week, reveal two out of five carers have put off medical treatment because of their caring role, making the problem worse for half of those carers.

The survey, launched today (18 June) as part of Carers Week 2012 highlights the effects that caring can have, both long- and short-term, on the emotional and physical wellbeing of carers. The research further revealed that caring had a negative impact on 83% of carers’ physical health, with 36% of carers sustaining a physical injury (such as back pain) through caring.

Many carers have delayed medical treatments ranging from a hernia operation to cancer screening as a result of their caring responsibilities. Tracy Sloan has cared for her son Philip, who has severe cerebral palsy, for 20 years. Last year, she put off a regular screening appointment and then discovered she had cancer – even after treatment, she had no time for recovery.

“Looking after Philip is so full on, that it just didn’t occur to me to keep an eye on my own health. I was really shocked when I discovered I had cancer and needed an operation. I came home from hospital exhausted, emotional and fragile. I really needed the chance to rest but instead I had to deal with Philip’s demands too and that took its toll on my recovery.”

Carers Week Manager Helen Clarke says: “It’s a scandal that carers can’t get the time or support they need to look after themselves which could be jeopardising their health as a result. Carers are feeling the strain of a woefully underfunded system and still we’re seeing more cuts. Unpaid carers save the Government a fortune – £119 billion a year, yet they’re let down in return. It is time for urgent action to tackle the crisis in social care.”

The Carers Week charity partners say this is further evidence of a growing care crisis and are calling for better financial and practical support for the 6.4 million unpaid carers in the UK. They want sustainable social care funding, better signposting and access to support services and for regular health checks to be offered to carers.

Anne Roberts, Chief Executive of Carers Trust, said: “This survey highlights once again the pressure that carers are under and reinforces the fact that they don't consider their own health needs - a huge issue for them and also for the care and support they provide. The evidence is clear - there is an absolute priority for Social Care and Health to work together to ensure that accessible and appropriate replacement services are in place so that carers can attend appointments, and follow up treatment. GPs play a pivotal role in identifying and supporting carers and at Carers Trust we are committed to working with them and all other relevant parties so that together we can ensure that carers get the information and assistance they need when they need it. "

Carers Week events are running all over the UK during 18–24 June 2012. Visit for details of regional activities.


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I am 85 and have been an

I am 85 and have been an informal (unpaid) carer most of my life because of family health problems. I am still the sole carer for my disabled son. Also, I brought my elderly/infirm parents from their council flat to my home to care for them, unaided, for 17 years. I have never been eligible for Carers' allowance, although I have suffered from physical problems caused by heavy lifting etc. About 30 years ago when I had to give up my job to care for the three of them I did not realise at the time that I was suffering from a breakdown. Although my relatives and I have never fallen foul of the law I, for no reason, twice shoplifted and had to appear before a local court. I was treated as a criminal - which I suppose I was - but bound over at the time. When I told a psychiatrist that I could not understand why I had not collapsed after all my years as a carer and as a social worker - he told me that the shoplifting was my way of collapsing. I suppose that there is and was such a shortage of psychiatrists that I received no treatment, but managed to shake myself out of it. I think the cure was the fact that after my parents died (at my home - both in their 90s) my son and I were at last able to take a holiday in Disneyworld, Florida. That was the best therapy we could have had. As my son said to me afterwards, 'Mum, you were able to come out of your shell!'

I desperately want the

I desperately want the Authorities to include Nursing HOme Management as well in the campaign. They too are unmerciful in how much stress they heap onto carers when we are unforunate to have had to commit our loved one into their "CARE??" because they suffer Alzheimers, have become wanderers away from home, up to 4 times a day, and then display the aggressive tendencies that the kiler disease can inflict on the sufferer. Carers/wives have no hope of being included in the life of their husband any more - they see to that. I was clearly told, the day he entered full time "CARE?", "you love him now, we care for him" Load of rubbish that was. They could not "watch"his movements - "He has a right to wander"
E U rules and "We cannot restrain him" - shortly after that, to escape the clutches of a lady also lacking mental capacity, it was agreed he could have his supper in his own room, "and you can lock the door" I was told. When I related the incident to Manager, saying I was puzzled having been told she could not "retrain him" she replied, "Actually they knew he was not locked in, you had the key, and could let him out!!!"
If, in desperation you try to get staff to implement the details listed in his care plan, I am convinced none of them reads it. It clearly states "J does not wear a vest in the summer, he will overheat" What do I see day in, and day out, vest, t shirt and pullover!!Poor lamb fries, sitting in his armchair - unable for months now to be able to mobilise, thanks to administration of anti psychotic drugs, in 2010 for far too long, too, which robbed him of his mobility. Finally Government has woken up to the fact that this type of medication is nothing less than evil, and are trying to phase them out. Too late for my beloved to benefit.

I am sick to death of excuses from Management too. Key worker, when he went through stage of not eating very well, suggested I could take in Milk Shakes - I no longer could take fresh fruit, in case he choked trying to swallow (they never provide same for clientsm or fresh fruit juice - just colooured water, called "juice" but really squah) - I left one on 15 June, to be kept in ridge, to be given gradually to him, and when I took another, on 20 June, I thougth it wise to check the state of play of fridge stock. i was handed the one I left on 15 - unopened!!!. I left the next one and use by date was 1 July. On 2 July, I checked again and, as before, that one I left on 20, was still untouched. Chef assured me "those dates mean nothing,it will be fine" and saw no problem with my giving my husband some of it. "After all it is only 2nd July today!" she claiemd. When I mentioned to Manager, did she take chef to task..........of course not. All she said was "He is eating very well now, he does not need it" End of story. When I discovered him sitting in trousers with extremely tight waist band, so tight it was difficult to undo hook fastening at waist, even though I had actually written in marker pen on inside of fly waistband "leave hook undone", when I mnetioned to Manager again, she merely shouted across lounge and dining room, to care assitant, delegated to caring for him that day, "R (naming her) come and explain!!" How does that foster good relations with relatives. More importantly would it not be better if she acted as a Manager should, and investigate why these slip ups happen, not look for other stupid excuses, almost insuting intelligence of carer.

Whilst fully apprecaiting "care" is the most important factor for our loved one, how do other carers manage their clothing situation. How many of you have to endure clothes being ripped by laundry staff, or buttons being ripped off (excuse is, happens when he gets aggressive) Silly part of ti is, now he is no longer aggressive and disease is past that stage, still clothes get damaged beyond repair! Likely problem, too, is that
laundry staff shove them into machine, clearly wash at too high a temperature,leave them tangled with other clients; clothes until someone decides to remove them fromt he drum, and then tumble, at too high a temerature too, to ruin garments. Is your loved one "turned out" looking smart, as they always did, before killer disease kicks into their existence, or do you have to weep when they present in screwed up unironed garments, with creased up trousers which you never ever saw before. To have a sign outside displaying a home "with dignity and care" is an aboslute farce.

I am sick of being given accusations - such as I have claimed they have not fed him. I have no appreciation for other clients, when I want help for my husband ( he was lying in bed, saturated in urine, at around 4.30 and had to wait until nearly 6.15 for assisatnce to be given.
My main concern was: he had already got a very sore scrotum, because the Authorities were purported to have 'changed the method of supplying continence products. Money was stopped in favour of providing boxes of pads for all clients - irrespective of considering which size would best suit which client'.

Falls abound, in this establishment so I am, in a way, rather pleased the anti psychotic removed my husabnd#'s ability to mobilise, unaided. He cannot fall from walking unwatched. Faces are all colours of the rainbow, bones are broken, and client is taken to hospital, eyes are black, arms are bruised. No one, not even Manager, is able to tell me how. We wives, if we dare to try to speak on behalf of any client, not just our own loved one, (many have no relative to shout for them, so their need is far greater) are then under a situation tantamount to blackmail. I have been threatened wtih notice to find another placement for him last year, and this year it was repeated, more firmly than before. I think the reason is because I am trying still to get the care mentioned in the current care plan, but am expected not to do so.

I now, if I see something lacking in his care plan, I have to shut up, and say nothing,m for fear of getting the threatened four weeks notice. Are other carers suffering the same treatment as me. If so, what have they done to try to get improvements for their loved one - not to mention to remove all the increased stress it causes to the carer. Stress can kill! Do they care.

Once condition is worse and nursing "CARE??" home is recommended/needed, doors slam shut, and no other service can ever be allowed in - district nurses, physio teams, speech and language staff. REason, "Home has its own nursing staff" Maybe, but are they trained in those branches of medicine and care. I think not. REform is urgently needed to change the set up for those poor souls who are locked behind closed doors,never to exit, that nursing "CARW?" home, unless they have to go to hospital out patient appointment or, at worse, A & E.

Someone lacking capacity can not speak up for themselves,need a reliable advocate, but if that advocate has to be "gagged", by fear, as described earlier, the client has no hope of obtaining better care, as detailed in lengthy care plans.

More regulation is needed, too, relative to staff turnover in these establishments. I am fed up because staff are found from strange sources, hardly any English speaking people apply, or are employoed. If home needs to "sponsor" staff, then they only stay for limited time, before moving on. Alzheimer sufferers need continuity. and need to be familiar with staff who are providing their "CARE"

SEveral of the staff at this "Dignity with care" home, I do not deny, are very kind, and do their best for all, but the few others certainly do not. I do not expect to see clients prodded in their backs, by impatient male care assistant, to try to gee them up, to move a little faster to the dining room, ready for lunch to be served, Nor do I expect to see them laugh when I quickly try to draw their attention to a lady, who recently went to hopsital for hip surgery, and is getting out of chair, wanting to go to toilet, without using any walking aid. I added I feared she would fall.........and he called to staff delegated to her "needs" for that day, and began to laugh again. That same fellow, not long before, one late afternoon, early evening, went to T v, altered channel, then walked to a quiet corner of dining area, where he seated himself, and sat for nearly an hour watching the football on the screen, from his rather "sheltered" and unobserved position. His time could have been better spent in speaking to several residents, to try to offer some stimulation for them. No, he preferred to watch footie, poor man.

What is the answer.

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