Personal stories

Comments: 19

Included in the Commission on the Future of Health and Social Care call for evidence, these stories illustrate how the divide between health and social care affects people's lives.

If you are a patient or carer, or use care and support services, we are keen to hear from your direct experience of these issues. Share your views by emailing or leaving a comment below.

Ray's story

My father, who suffered from dementia, was admitted to hospital with pneumonia 11 weeks before he died. As my dad was already known to social services with a care package already in place we thought the process for discharging him would be pretty straightforward... how wrong we were! What we didn't realise at this stage was how difficult, long and traumatic a process applying for continuous health care funding was to be.

The first multidisciplinary meeting was arranged without myself or my mother being told, I insisted that it was rearranged. And then the picking apart of my dad's care needs started.

It felt like a process, we were just an inconvenient number causing extra work in paperwork that would always have the same outcome – no funding.

Dad could not be left unsupervised as he was unable to do anything for himself and we felt as a family his care needs were high; he was at risk of malnutrition, dehydration and pressure sores and prone to recurrent infections. None of these needs  seemed to be defined as a health need and it took five weeks to reach a decision on whether he was entitled to continuing health care - five weeks of his life that we can never get back while health and social care fight over who pays for his care, where is the person in all of this, where is what is best for them?

Then began our next battle, it turned out that dad's care package had to be arranged through the hospital's social services team which meant that dad could no longer have the care agency he had been using for the previous two years. Dad had had the same carer every morning for five days a week for the past two years. She had become like part of the family and although you are supposed to keep a professional distance it's very hard not to become friends with the carer that you rely on so much, who comes to be part of your life, is the first person you might see after a sleepless night and is the one always there for you day in day out. For my mum this was a huge blow; they were taking away the only familiarity and support they both so needed at this time. Mum felt like a stake had been driven through her heart, her beloved Ray was dying and her carers were being taken away too. Bear in mind the monthly bill for my dad's care was running into four figures.

The community nursing team even tried one last attempt at getting continuing health care funding for dad and even 24 hours before he died they still turned him down. They said that the community nursing team visiting once a day to change the pump and the night sitter for the last three nights was the health-funded contribution to his care. What I now ask is: why should anyone at the end of their life have to pay for their own care to die at home?

We are grateful to Sally-Ann Marciano for sharing her story. Sally-Ann is on Twitter @nursemaiden

Clifford's story

My dad has vascular dementia. He is 77, very physically fit, has no cognitive understanding, and can be very difficult. After a very distressing emergency admission onto a mental health assessment unit, it was decided that he couldn't go back home with mum. Dad was assessed for continuing health care (CHC) funding (full NHS funding), and this was declined, so in finding a home for him we were limited to those that the local authority would fund.

His needs are very complicated and hospital staff told me that there were 'very few' homes that would be able to cope with him.

There were no care homes in my parents' area which could meet all of dad's assessed needs for the amount that the local authority was willing to pay. The only home that agreed to take him was 22 miles away from mum. In order to get to this home, mum (who is 73) would have had to spend two hours on a bus, each way, changing three times on each journey. By attempting to place dad further and further away from family and friends simply due to cost, his assessed need for family contact was not being met. I then made a formal complaint to the county council's head of consumer relations, and also to the head of legal services. Dad was reassessed for CHC and was granted it. We were obviously pleased with this result as it meant dad would be fully funded by the NHS; however, we couldn’t understand why, only six weeks earlier, he didn't even meet the basic criteria.

CHC funding is more generous and dad was subsequently placed in a home four miles away from where he has lived for 50 years and where family and friends can visit him easily; he is visited around 4/5 times a week. I know that if I hadn't fought this, dad would now be in a home 22 miles away from family and friends, with perhaps visits once a week.

I could see the same situation happening to others on dad's ward, and I am appalled by the whole system and the way in which dad was let down by his care co-ordination team.

We are grateful to Becky Huxtable for sharing her story and to Age UK for putting us in touch with her.


#40762 susanne

Three special friends stick in my memory.the first to be admitted to a so called prestigious university hospital amongst other things was dragged on a visitors wooden chair backwards across the ward with visitirs looking on with her nightdress up above her thighs....her punishment was because she had called out several times to go to the toilet...I arrived in time to see what was happening and took over.The toilet was filthy and the wall encrusted with faeces. She called out in distress throughout the day and was given anti psychotic medicine without any consent process I was lied to when asked what had happened to her as she couldn't speak or walk or eat and drink as a result, by saying she was just tired = she was just shut up .couldn't speak or get out as she was too ill. She went home thank goodness and died peacefully months later in another hospital.
Second friend had a stroke, she was in her eighties..when asked if she was starting any rehabilitation the nurse laughed and didn.t bother to answer. The stroke made her incontinent which was a huge cause of distress for her yet she was often left for hours in a wet bed by an open window.
Third friend also had a stroke and was on a drip. this came out and the bleeper was warning the nurse something was wrong.she looked back didn't realise she had been seen and walked away, another nurse relaised the incident had been seen and said she would fix it. The noise of the bleep was right behind her head , the partition walls were so thin she could also hear the constant cries from the next ward. As a result I now realise of not giving her drinks my foriends lips were peeling.....the nurse said I could wet them = if I liked= when I visited. The locker beside her bed was full of very soiled cloths left by a previous occupant. I told a nurse who said we don't do peoples laundry her. Another told me to put them in the bin on the ward where they were again a serious health hazard. A beautiful friend died this way Previous experience had made it obvious that complaints would not be dealt with so as well as being helpless there is also a lot of guilt about not being able to help more than write letters which were never answered and to let the ward know I had seen incidents.they knew it wouldn't be reported any further because of fear of retaliation.
All people in vulnerable states should be allocated an advocate to look out for them
Will the joint health and social care proposals make thingsa better/stay the same or get worse? Unpredictable when both play power and control games to the detriment of the public
eg another person in my circle needs a step to get out of the door. We know someone who would do it in a day for nothing. It is HA property - he is not allowed = they needa social services and occupational services formal assessment before considering the job, /the waiting list is over six months. So she cannot go out of the door on her own, her independence is hugely compromised by the grotesque nonsense that is generated by systems which are actually at times absolutely taking advantage of peoples vulnerability and ruinng their last years
These years should not be spent in so called 'homes; they have no resemblance to homes..staff wear uniforms .they share rooms like children . eat when it suits others ditto go to bed etc etc it is humiliating and degrading. house building should consider building for life and servies creating small homes to suit different people..and never call them units or the resident clients.
Nurses are getting much of the blame but there are teams of health workers who are all culpable

#40774 Jacqueline McMenamin
unemployed RMN

My adult son has ASC. He was living in supported living and doing great for over 3 years. Despite legal fight, he was placed in a flat with no support. He had a break down. Now he is back with me. The stress has made me I'll and unable to work. He is supposed to get 20hrs of support a week but only gets between 4/8.

#40796 Mo Smith, MBE, FRSA
Chair of Trustees

As a project that reaches the isolated elderly in South West London, I have a vast experience of attending hospital appointments, A&E and visiting clients on the wards. I also am engaged in assisting with care packages, liaising with social services and attending Community Ward meetings. It is my observation that in the catchment area of South West London, Social Services are facing the difficult issues and looking for ways to address them. On the other hand, I see the Health Service declining primarily due, in my opinion, to a lack of wanting to listen to their patients or their patients relatives/carers. They may produce their token Ipads for the patients comments, but it will take a revolution of care to change the attitudes. Doctors seem to be very unaware of the issues faced by older people with Dementia - they still continue to ask questions that their patients cannot answer correctly and continue to not take notice of carers. There is still a great divide between Health and Social Care and the voluntary sector often acts as a bridge between one and the other. Having recently spent a great deal of time with a client who was dying in a hospice with Cancer, I wished that every older person who was in hospital or in residential care could experience the care and compassion of the hospice staff. After all, the majority of older people on the wards and in residential care are there because they are on the road to dying. They all need to feel the care and compassion of those who care for them and my experience is they simply don't. It is time for the health professionals to lose their expressions of superiority over social care and their patients and begin to understand that every person with Dementia or who is dying, albeit slowly, need to feel the compassion of those who care for them.

#40798 D Hill

The above stories are shocking. What future can a a 73 year old expect to live for.
Do the people getting CEO and management salaries read this. Why are they in these positions, who makes the rules that determine the services?

#40799 Ruma Dutta
Consultant geriatrician

My expert opinion as a coal face worker who encounters this issue several times every working day, is that the clinicians involved should determine whether a patients's needs ae due to health o problems or social( and not a panel of budget holding faces. Also that I dont understand why a bathing need or dementia are social needs anyway... there should be no different pots and socialservices should not have anything to do with care in the older person as these are all due to health issues and should be free. If somebody needs long term care why is that a social need and social funded? That is inequity

#40807 Angela M Cavill...
Husband's Carer

I write a blog about how the system has constantly let us down. Http//

My husband became suddenly severely disabled in 2007 after contracting a staph infection which caused a incomplete level C3 spinal cord injury. In 2009 we were assessed as qualifying for fully funded continuous health care. Since which time we have had to fight to get suitable qualified staff and still fight at every turn now.

Point 1 : you prove you have an on going serious medical need but why then do you have to put up with under qualified, under paid, inadequate care worker staff.

Being severely disabled you have to fight for everything at a time when energy levels are low because of illness.

Point 2 : the provisions for suitable housing are totally inadequate

When you have complex mulit-faceted needs no one takes the lead to make sure that you get the regular check ups you need, co ordinating the different consultants you need access to.

Point 3: there is no integrated care in the community.

Point 4: Family carers that want to work are not helped to get back work and the system of unreliable care worker provision makes it near impossible.

that is what it is really like at the coal face.

#40863 Anon
Home Manager

I see it first hand, patients placed with us, many in an emergency,crisis situation. For example their main carer has taken ill, there previous placement has broke down, they are 'bed blocking' in an acute ward etc etc
We attend meetings between the LA and the CMHT both argue the toss re who should pay. LA would prefer my patients to be in hospital (it costs them nothing) or on some occasions placed somewhere which, we as profession mental health nurses know will not meet the needs! But it's a cheaper option.
The LA and Health need to sort themselves out and work together instead of being against each other in trying to avoid paying their 'share'.
People with Enduring Mental Health conditions which have been life long despite treatments and support should qualify for CHC, they don't, and yet if you are physically disabled you can get it. Discrimination by my book. It needs to change.

#40879 desmond ian pettit

Urgent need for the Department of Health to produce a manual for those
older people who wish to remain in their own home

#40952 Heather Hughes
Social Care Planning Manager/ former carer
City and County of Swansea

I was a carer for my mother for four years ( she died of cancer last year). Initially I was caring long distance, 7 hours drive away.

Mam was classic 'frail elderly', with heart disease, incontinent and with other chronic conditions, and experiencing repeat urinary tract infections, constipation (or sometimes no obvious cause), leading to episodes of severe delirium which would come on over weeks and take sometimes months to lift completely. Mam was admitted as an emergency 9 times over a period of 18 months, with around 5 months as an inpatient in total. In between episodes she was self caring and fiercely independent. My life became one of emergency 7 hour dashes up the motorway, endless communication with social workers, primary and secondary care and her network of elderly friends, and trawling the net trying to understand what was causing her to become so dangerously ill so frequently.

I moved mam to an extracare housing scheme near to me after nearly two years of this, and she had no more admissions until the day before her death, and a happy and active 19 months of life before being diagnosed with metastasising cancer a week before she died.

The care she received in the teaching hospital ranged from excellent to sometimes abusive. Having been let down by the GP practice prior to her second admission, I was able to build a genuine partnership with her GP , mainly via e-mail, and eventually with the community matron. Mam had 2 periods of re-ablement, and domiciliary care at 2, 3 and 4 calls a day during this time. The latter did not prevent her frequent deterioration and subsequent emergency admissions. The social work input was mainly limited to arranging the domiciliary care.

The stress of being admitted to hospital would intensify mam’s delirium to the point of needing full sedation with antipsychotics. I begged and pleaded for the PCT to put in place care to keep her at home when she began to show symptoms, but was told there was nothing available and that a hospital admission was appropriate – but she had to get to the point of hallucinating for that . I tried to argue that the financial cost of all these admissions, compared to putting flexible care around her at home for short periods, was wasting resources, but this had no effect. I eventually ( after ninth admission )insisted on a Continuing Healthcare assessment as a way to try and achieve this, but the PCTs delaying tactics and outright lies made me abandon this and put my energies into getting mam moved close to me. The social worker insisted she should go into residential care, which mam refused to do, as when she was well she functioned very well with an MME score of 28.

I have a social work qualification. I know how the health and social care system is supposed to work, but I was powerless to influence mam’s care at a distance. Nothing was joined up, with each part of the system only interested in their part of the problem. Primary, secondary and social care all worked separately , with the former two needing as much attention on integration as the latter.

My knowledge was perceived as a threat by most of the professionals involved, and as a carer I was constantly being shut out, not believed or made to feel a nuisance. As a single parent with my youngest child taking GCSEs and A levels during the distance period of caring, this was possibly the most stressful period of my life.

Some of the incidents that occured in relation to Mam's hospital care:

Waiting in A&E for 6 hours with nothing to eat or drink, so cold she had to be wrapped in a space blanket when she was admitted to the ward.

Coming round after full sedation for 3 days, mam got out of the hospital bed to go to the toilet , slipped on her own urine and had a complex fracture of her arm. Why wasn't she being watched, they knew she had delirium?

Being discharged , taken by ambulance in her nightclothes to a cold empty house with no food in. I was rung by a neighbour who took her in. I had asked the hospital to contact me when her discharge date was known so I could travel up.

Being sent home as she was a 'social admission' according to the doctor. She was readmitted the following morning still hallucinating.

Discharged , and fell the following day, readmitted with large scalp wound

Admitted with her medipac of tablets, I looked at her notes the next day and she was not receiving any of her regular meds. Found the nurse who asked me to bring another pack in. She then rushed over to the pharmacy
to get the prescription, brought it back and discovered it was wrong.

Staff nurse taking down notes as I arrived. She had written that mam lived in sheltered housing with two daughters nearby. Mam was delirious, this was rubbish but the nurse was taking it as gospel.

Virtually every admission it was assumed mam had dementia. No one episode was ever linked to another. I had to write out sheets of paper saying ''X is self caring when well. She has a delerium, NOT dementia. This has happened before '' Often I wasn't believed.

Finally having to cajole the secretary of the head geriatrician to arrange a time to speak to him, give him the facts, and ask him to look at the case. Despite all the admissions he had no knowledge of mam, eventually said he had never known anyone to deteriorate so quickly and severely, but it became obvious he hadn't read her notes and had no idea social services and the community matron were involved. Why didnt they, or the GP, refer this up to him?

Being told by a GP, and the Community Matron, at least 5 times that I was worrying about nothing, mam wasnt starting another episode, her urine was clear, only to have rushed into hospital as an emergency a couple of days later.

Same GP visiting mam at home every day for a week to try and keep her out of hospital - thanks Dr T

#41526 Paul

There are lots of very sad and moving stories set out here, and it is impossible not to feel a great deal of sympathy towards the families involved. But the answer cannot be even more taxation - especially as the people who will pay - the young - are a) already taxed to the hilt; b) paying massive transfers to the elderly and their children through inflated house prices; and c) will not receive social care themselves in old age because the system is and would become even more of a Ponzi scheme, which will become increasingly unaffordable. As the chief beneficiaries of greater state funding of social care are the elderly, the only way I can see extra funding working is to combine income tax and national insurance, meaning that the retired would then pay national insurance and therefore provide funding for long-term care. This is the only way to ensure fair burden-sharing across generations.

#42383 Richard Powderhill
retired and disabled

The local social services have refused to continue to maintain & repair as & when necessary stair lifts in disabled persons houses, saying `they now become the responsibility of the users like a `kettle or iron`. This is illegal under disability laws, this has been pointed out to them on several occasions, yet they still refuse to act. this has resulted in life threatening conditions on one occasion causing serious injury and in the writers' case causing isolation in upper floor of residence. Authority is not obeying its own laws, BUT YOU TRY GETTING SOMETHING DONE A|BOUT IT.

#42385 PearlBaker
Independent Mental Health Advocate and Advisor,Carer

Until there is an understanding of the word 'integration, nothing can possibly change.
There has to be an understanding that all agencies involved in the above MUST all be working from the same 'hymn' sheet.

The Care Programme Approach section 117 has to some extent been 'watered' down, however a similar system should be in place for integrating the system of care, health, and physical Wellbeing.

This is how it works;
The form will include all agencies involved in the above.
A multi disciplinary assessment organised by a designated Care Manager Co-Ordinator will be responsible for its implementation, and ongoing services. All agencies including the Carer will receive a copy of this with contact details of how to contact someone at ALL times in emergency.

The CQCs number will also be written down on this form, for those individuals in regulated services.

The MONITORs name, and contact details should also be included on this form,, as they are responsible for monitoring health and care services.

A brief description should be given on what their responsibilities are.

If there is to be any chance of reaching the 'goal' of an 'integrated' health, physical, and social care, my suggestion must be taken seriously.

I have years of experience, Independent Mental Health Advocacy and Advisory has kept me very busy.

#366766 pauline hardinges

Things don't seem to get any better. One would think as Alzheimers is an organic disease terminal and progressive, that the CCGs would assess a patient much quicker and realise that by delaying tactics they are putting extreme pressure on carers, who can end up with stress related problems themselves thus costing the NHS even more money.

#544052 Sarah Lund

That's disgusting. I've lost all faith in ANY sort of medical team. Due to my own experiences. No amount of apologizing, is ever going to make up for it. I don't care how much money was poured into whatever. It shouldn't even be about money. It should be about what the patient/client wants. These fat cats, are just constantly rubbing their hands with glee, trying to find out how much they're getting paid, week in, week out. Money doesn't solve emotional welfare. Typical as always.

#544313 Theresa M Farmer

Oh its a long horrific road. Noone cares. My dad is at last stage vascular dementia Alzhiemers Disease AND psychotic disturbance THAT IS UNDIAGNOSED. HE IS UNDER MDICATED AND WRONGLY MEDICATED? 1 lorazapam 3xdaily 1 tramadol twice a day-morn&nite....This medication has no calm affect on my dad. I NEED TO SHOW RECORDINGS I HAVE TAKEN OF MY DAD IN HIS DISTRESSED STATE OF MIND 24/7 . ..we have another medication revier on thu-but, we can GUARENTEE my dad will be as quiet as a mouse. then once the tab he's been given before we arrived wears off he's back to crying screaming shouting . OMG its shattering. Noone cares.

#544984 Diane

my mum who is coming up to 87 years has been in a care home for two years in the dementia unit. She has vascular dementia, until May this year mum was still very independent we could hold conversations with her. She looked after her own hygiene loves to smoke and was forced to stand outside in the winter months. After a series of falls during Ons week in May mum was assessed and we were informed her needs have changed and she needs to be on s nursing home. Since this time mum has had one to one care as she is now in a wheelchair and they feel at risk of trying to get out and walk. Whilst we understand the risk of her falling, they have taken her independence away by not encouraging her to walk. So now she has to rely on caters to take her for a smoke or a walk to the bathroom etc .we see mum gets agitated as she has always been lively active and so island person who lived the outdoors. The only thing she had now is her cigarettes but due to her condition mums brain doesn't tell her she has had a smoke it's a fixation of hers. We have been served a 28 day notice from the home which is up on Tuesday this week. The social services have informed us that local nursing homes cannot meet her needs. The want to move her 25 miles away. She is being treated like a problem and nothing more. We are at our wits end unsure what to do. Our local mp is aware of the situation but we feel we will be told she has to go to this home and it's not our decision. It's a distressing time for all our family as we are her voice mum is unaware. So sad that we as a country do not take care of our own but run to the aid of disasters all around the world offering millions whilst the elderly suffer at the hands of social workers and carers who have no understanding of a persons real need to be loved and treated with dignity and respect.

#545021 Wendy Watling
Retired 24/7 carer

The care industry is shambolic and nobody seems to know or care! residential/nursing homes are money pits for the people who own them,old people are,at best,tolerated,not given the care they should
receive,or any's so sad,our elderly deserve better.

#545968 Theresa M Farmer

...eventually Dad was medicated for psychosis-orlanzapine. (Eligible for cHC/nsh funding;2nd assessment, since feb15.
Served with a 28day eviction notice-days after being prescribed the medication. Dad is home-24hr care needs-And we are still fighting the cortupted system..

#547585 Lynne Nye
Activity co-ordinator

My 89 year old mum had a fall 2 weeks ago which has resulted in her having 3 fractures in her hip and pelvis. She was admitted into hospital 18 miles away then two days ago was transferred to our local hospital on the rehabilitation ward were we thought she would remain until she was discharged home. I got there last night to be told that someone had been to see her while a friend was visiting no family present that she would have to go into a care home for four weeks as if she stayed in the hospital it was bed blocking. To mention care home to my mum was not the right thing to say. She was a very independent lady who lives in her own home with some care so you can imagin how distressed she has become since been told. I now will go this afternoon and try and explain what is going to happen the staff say its 4 weeks in a care home then back to the fracture clinic then to the ward for intense physio to get her ready for discharge home. As a previous carer I know that quite often people that go to a care home don't always go home again. My annoyance was that none of the family were present when this lady came and talked with mum to me that was unacceptable.

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