OUR STORY

SEE ALSO “ABOUT US” and “AIMS OF THIS SITE”.

 

BRIEF OUTLINE

This first paragraph briefly tells about our story, an experience you ‘could’ find ‘yourself’ in.  You will find our story in more detail below.

A simple fall, led to a fractured arm by our elderly mum, this led to her stay in hospital and this single event led to a rollercoaster of a 18 month journey, where our family feels they had no control about what was happening or what was going to happen next.  We want people to prepare and be aware that suddenly an unexpected event can lead to a chain of events where theremay be that processes and decisions that are happneing around them they are not aware of.  This can all happen so fast before you realise, before you know it your loved could have a brain haemorrhage, falls from bed and pressure sores and other things.  And if you don’t know the system events can happen so very quickly that you are just about coping with current events when something else happens.  It can be a snowball effect and confusion and worry and fear reign.  Sometimes you may get to a point when you know something is not right but how can you solve it if you don’t have or are not given the information you need.

Events happened around us where sometimes we didn’t even have time to intervene!  Sometimes because we didn’t even know what was going on.  And this despite asking. We didn’t even know at times what we should be being told.  Most imporantly, “you don’t know what you don’t know”.

We say don’t stop ever asking, don’t be intimidated.  If people are not forthcoming with information, keep asking again and again and again until you get the answers you are entitled to know.  Until you get explanations, until you are happy.

 

MORE DETAILED STORY

By telling our story, and by others telling theirs, via this website we hope to inform, enlighten and help you, vulnerable elderly people reading this and their carer families with your care journeys some of which may be un-known territory. From our personal story we will highlight areas and events we feel you need to particularly know about, including events that can happen, what you may need to look out for, in order to possibly avoid some of these things that happened to our mum, Renee, and us.
We will direct you by a link to more information, documents and other areas of this site throughout the story. Our story, we hope, will encourage you and others to come forward with your experiences. We are the first to applaud good care, but we must raise awareness of, and stop bad care.
Please Note: We are not saying there is bad care everywhere, there is certainly good care out there and good carers and professionals. But bad care is affecting a lot of people. Just because your family may be experiencing good care in a home, we cannot assume that other families are. Let’s not be defensive, let’s support working together to eliminate poor care.

 

 

STORY BEGAN 2009 AND JOURNEYED THROUGH HOSPITALS, CARE HOMES AND SOCIAL SERVICES IN A PERIOD OF 15 MONTHS.
• Katie Warren’s mum Reneé, 90 years old, tripped and fell over.
• Admitted Broomfield Hospital.
• During this stay we experienced service failures. Inadequate inclusion as a family, poor communication, lack of information, confusion, disjointed care by the hospital, services not working with each other and poor and rude attitudes towards a concerned family asking quite rightly questions about their relative’s care, being the next of kin and the day to day carers looking after Renee and with her consent.
• On discharge we received inadequate information, despite asking over and over for it from the hospital, misinformation, incorrect information on procedures and options by social services (adult social care) within the hospital, changes to prescriptions we didn’t know about, and a seemingly impossibility to obtain any answers easily once discharged. Care homes, GP, not understanding prescriptions, information not relayed to them, etc, a worrying mess.

(Family started Complaint proceedings against Mid Essex Hospital Trust)
REHABILITATION?
• Discharged to what we were told was ‘rehab’, to help her return home and decide how her care would proceed.
• We thought mum would be helped to get as better as she could to return home. We ended up at a standard residential care home, that did not do any physio with her. By the time we got our head around this inefficient system and worked out that what one is told is not always correct, fighting for information all the time, mum did not get adequate rehab. Given few and inadequate options, choices, nothing was explained properly.
• Put under extreme pressure as a family by social services to decide the best care for mum in a rushed way after rehab had been poor, they had been inefficient, and mum was still needing help to be recover and be mobile again. They wanted her to give up her own Council home before even knowing what options were available to her on the best way forward.
• Told we had 48 hours over a weekend to make a decision what’s going to happen with her care. This home offered poor care, we moved her. We had no help with finding a care home, we were only given options from Social Services about ones miles away – and this was after numerous phone calls and unacceptable attitudes. These options seemed to be to their own agendas. We discovered there were homes available near to where we lived.
• Had to find and go look at 12 homes over a weekend from finding them on the internet ourselves as we could not have her at our home and she couldn’t go to her home at that time.
(We started Complaint Proceedings against Adult Social Care)
(We made Complaints to CQC and care and nursing homes)
JOURNEY OVER NEXT 12 MONTHS
Having no choice we had to move mum through 2 residential care homes, another 2 stays in Broomfield Hospital, and 3 nursing homes (the last home one in which she stayed whilst we were fighting to get mum home), and William Julien Courtauld Hospital, Braintree before changing our life and looking after her ourselves 24/7, demanding social services acceptance of substandard care in homes they funded people to be placed in make it happen.
• Discover of brain haemorrhage from fall in a home.
• Development of grade 4/5 pressure sores on mum’s heels (that’s down to the bone) and grade 3 to sacral area.

Renee058   Photo Pressure Sores Sacral Renee056  See more photos at Our Documents

 

 

READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE – PRESSURE ULCERS – WHAT YOU NEED TO KNOW. BEWARE, DISTURBING PHOTOS.
READ “SEE OUR DOCUMENTS” – UNDER “ARTICLES” FROM HOME PAGE ON THIS SITE “RENEES PRESSURE SORES HEALED, BEFORE AND AFTER PHOTOS”
READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE – WHERE IS THE CARE PRESSURE SORE ARTICLE

READ THIS DOCUMENT – UNDER ‘USEFUL DOCUMENTS’ ON THIS SITE – WATERLOW RISK ASSESSMENT TOOL

 

• We demanded competent nursing. A case conference was then held, with us, ICAS (Independent Complaints Advocacy Service) advocate assisting us, and social services, physiotherapy, district nurse manager/nurse, home representatives. Family read out pages of areas of care that had not been heeded, that had not been put in place, quoting NICE (National Institute for Health and Care Excellence) guidelines what we felt resulted in mum’s pressure sores.
• An unbelievable situation, with us having to say all this to professionals. With us being asked “what do ‘we’ want to happen?”. We said “we want to go wherever competent care and nursing is, because it’s not here, isn’t that obvious?”. We felt we were looked at in bewilderment that we were making complaints about wounds down the bone?
• Mum was deteriorating and looking ill during this time, and to us, fading fast. We believe she would have died. No-one seemed to batting an eyelid about her wounds or condition, taking us or the situation seriously..
• We were incorrectly told that mum would not qualify for “Nursing Needs”. Always question decisions please!
• Before being moved to receive correct nursing care and pressure care management to heal her wounds, adult social care provided night sitters as she had now fallen out of bed twice and the family would not leave her.
• The pressure care treatment and management of mum’s wounds changed from one day to the next after our intervention and demands, to all that we had researched, educated ourselves about and been fighting for without anyone admitting any wrongdoing. Incredible. Now she was being turned infact every 2 hours, legs were being elevated, relieving of pressure as much as possible, on an air alternating mattress, Tissue Viability Nurse input, on antibiotics for an infected heel. If we hadn’t had intervened what would have happened?
• We checked and double checked all nursing homes mum moved to, social services promised excellent care now. It didn’t happen.

READ THIS DOCUMENT – UNDER “ABOUT US – SEE OUR DOCUMENTS” FROM THE HOME PAGE “CASE CONFERENCE NOTES (OUR OBSERVATIONS AND OPINIONS)”

 

Our second stay in Broomfield:
• After mum having a seizure, the doctor told us nothing can be done, on medication she was discharged, even though we questioned this. He said only if she fell again and hit her head would she get possibly get worse. No information about how she might be affected, even when we asked and asked. Very rude attitude to us in the middle of the ward.
Our experiences with Adult Social Care
• Adult Social Care (Social Services) funded mum’s care home placements. They are responsible for safeguarding these placements.
• Attitudes were poor.
• Information provision was lacking or we were given misinformation or wrong information.
• Concerns were not taken seriously.
• Safeguarding of Vulnerable Adults alert taken out by a social services staff member looking after our case at the time regarding mum’s care and pressure sores. We discovered this after we requested all mum’s care notes under Freedom of Information Act. This was not investigated as it legally should have been. This process is broken down into sections called SetSafs, so we can see how it was investigated, what was discovered and what was the outcome and action taken. We were told this was investigated, and there should have been SetSaf paperwork to show this.  It should have been closed down by the relevant SetSaf 4 form, none of this happened.  We didn’t see this social services staff member who took out this alert against the care home again after this, they became uncontactable to us.
• It was suggested we have “unrealistic expectations” because we were speaking up about unacceptable care. We do not feel it is unrealistic to expect pressure sores down to the bone to be prevented, for our family to have to repeat and repeat the same information over and over again to carers because no-one takes any notice, to not speak up when we see medication wrongly given, to point out air alternating mattresses aren’t working properly or are flat? Most professionals involved around us acted this way.
READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE –  WHEREISTHECARE ARTICLE – SAFEGUARDING PROCESS,. WHAT SHOULD IT LOOK LIKE?  WHAT ARE S.E.T.S.A.Fs?

READ THIS DOCUMENT – UNDER ‘OUR DOCUMENTS’ ON THIS SITE – CASE FILES NOTES QUOTE 10 – S.O.V.A. MARKED AT RISK BY ADULT SOCIAL CARE (CLOSED DOWN ILLEGALLY)

READ THIS DOCUMENT – UNDER ‘OUR DOCUMENTS’ ON THIS SITE – SOVA SAFEGUARDING OF VULNERABLE ADULTS ALERT BY CARE HOME AGAINST KATIE WARREN

 

• Care Notes show that opinions and prejudice by professionals made about our family followed us from place to place – and genuine concerns were not heeded as they should have been and there was more concern about the ‘complainant’ with comments made like “Move mum to a home far away from daughter”
• Made to fight for and discover carers’ entitlements instead of offered all options.
• The audacity to try and charge mum for care home fees where she received injuries and substandard care.
We refused.

 

READ THIS DOCUMENT – UNDER ‘OUR DOCUMENTS’ ON THIS SITE – ADULT SOCIAL CARE APOLOGY DOCUMENT – SERVICE FAILURES  

READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE – RENEÉ DEWEY’S CASE FILE NOTES.  COMMENTS MADE AND FAMILY REPLIES TO COMMENTS.

 

These are the reasons for mum’s move through homes and hospitals:

Poor care, neglect, mum’s unexplainable deteriorating health, not adhering to care plans, developing pressure sores down to the bone, not adhering to the law and managing pressure care adequately, moving from residential care to a nursing home care temporarily to receive competent nursing before demanding social services find an excellent home and for assessment and rehabilitation in a hospital, by then too late.

• We had to educate ourselves on pressure care and make sure it happened. Make sure homes stuck to care plans, check everything, have no sleep for months and months through worry, Katie didn’t eat properly for months worrying about getting to homes to make sure they were sticking to the right care and was receiving adequate and suitable nutrition, finding yet something else wrong when she arrived time and time again. Completely frightening and exhausting.
• As time went on we couldn’t watch this anymore, we had to consistently and continuously intervene every day, and check care for hours every day to ensure wounds began to and continued to heal.
• The past months and things that we continued to see frightened us and we were not confident that mum would continue to be safe, we could not keep up indefinitely this level of intervention to keep her safe, we hoped homes would adhere to good practices but we were not confident they were or would.
• It had been one crisis situation after another, with everyone acting around us as if this was all acceptable care.
• We decided we had to change our life and get mum home to ours and fast, where she wanted to be. It was not an easy decision, but the only decision in our opinion. We could not go through this any more and we certainly did not want her going through it. Despite all our huge efforts we couldn’t protect her in these homes.
• We changed our house, installed equipment, Katie was not able to work hardly at all, and had to be provide 24/7 care with help of carers that we would not leave with her until we observed them and trained them ourselves. We promised mum no-one would ever treat her this way again.
• Katie was battling bladder cancer at this time probably from the stress of the whole situation. Believe it or not, this came second to how frightened we were to get mum safe. We thought she would die and we the whole family would be ill with the worry.

 

 

BEFORE MUM WAS ‘ALLOWED’ TO COME HOME TO THE FAMILY

• Told by Adult Social Care wrongly that mum was not allowed to leave the care home and be cared for at home by the family.
• We felt care home managers, social care professionals, hospital staff were closing ranks against our family.
• We were convinced and agreed that she be assessed correctly at last and have all chances of rehabilitation before coming home by GP at William Julien Courtauld Hospital, Braintree. We have acknowledgements and apologies for the care received in this hospital and a personal letter of apology by a staff nurse.
• We felt intimidated and that obstacles were being put in our path to avoid mum being allowed to come home at every turn. Notes show that professionals attempted to distance family from their loved one. Meetings where supposed obstacles were raised that we had to come up with answer to. We did. We felt mum’s poor care resulting in her wounds were wanting to be brushed under the carpet.
We sought help from the following to secure an elderly lady to return home to her family which was her human right:
– Member of Parliament
– Independent Complaints Advocacy Service Advocate
– Independent Living Advocacy Advocate
– Action for Family Carers Advocate
– Power of Attorneys for Health and Welfare and Finances
– Solicitors
– Solicitor and Independent Consultant to the Legal Profession
– Family requested to put together their own care plan. We did – and had it reviewed by an independent consultant to the legal profession on elderly care.

 

SEE THIS DOCUMENT – UNDER ‘OUR DOCUMENTS’ ON THIS SITE – PROPOSAL FOR CARE PLAN FAMILY WERE REQUESTED TO WRITE BY ADULT SOCIAL CARE FOR MUM TO COME HOME

 

• We left no stone unturned, this poor care could not go on, Adult Social Care had not found in our opinion adequate care providers, there was no choice and mum’s wishes were going to be upheld. This fighting for what was right, half killed us as a family.
• Still in the weeks before mum came to live in our home, poor care was happening in front of us, which we were reporting day after day to Adult Social Care whilst supposed decisions were still being made for her to come home and equipment put in place. We felt efforts were being made to silence us.
• It took months to get mum home whilst we felt efforts were made to keep mum in care. Finally now in 5 homes later, and in a temporary home as still social services would not let her home, still finding air alternating mattresses not plugged in and high-low beds not lowered to the floor we would not wait any longer.
• Children of elderly loved ones terrified of keeping them in care can be arrested in this country if, even for their own safety, take them home out of “nursing care”. At this point, Katie didn’t care if she was arrested. Adult Social Care agreed then she come home within a couple of days.

 

READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE – NURSING/RESIDENTIAL HOME, THE DIFFERENCE. RISK ASSESSMENTS TO EXPECT.

 

CARE AT HOME WITH FAMILY

• Adult Social Care requested we had to keep a diary to prove adequate care was being provided even thought we felt our concerns were not being heeded as to why mum came out of care.
• We secured a care package/personal budget that would assist family to look after mum who needed 24/7 care.
• We demanded “exceptional circumstances” in that mum had been wronged and the only care that would could be ensured to provide the best care to enable her to heal from her wounds and maximise any remaining potential would be by her family in the short term and that Katie Warren had to stop working in order to provide this care caused by failures in the system. We fought for this right to be paid for some of this care.
• In fact we as a family oversaw all care.  We stipulated to Adult Social Care that Renee would not be left in the hands of any carer again unless trained by and observed by the family.
• We had to dismiss 2 care agencies for poor care, poor training, and working practices and finally found a third who provided good care.
• Providing correct pressure management and practices all Renee’s wounds healed, she put on 2 stone in weight, she became more mentally alert, and looked a different person.
• We had to fight for equipment, services and all care rights for an elderly person and their family wronged by the system during a hellishly worrying, stressful and distressing time.

 

AFTER MUM’S PASSING

• We wish that family’s that are contacted regarding return of equipment are not called when they are newly grieving and may have just someone traumatically and told “our paperwork says Mrs Dewey is deceased. When can we collect the equipment”. Without a sorry, and no empathy.
• The guilt that we, as a family feel because we could not ensure, with all our tremendous and continued effort, the care that mum deserved, is overwhelming. We pledged to start this website and tell our story and raise public awareness and empower carer families with as much knowledge as we can so that we might enable you a better journey.
• Throughout mum’s time in care, when she was at home cared for by family and after her passing in 2010, we have fought a 3.5 year complaint process against 3 organisations – Adult Social Care, Central Essex Community Services (CECS) who took over from the then Mid Essex primary care trust, and Mid Essex Hospital Trust and have received full apologies and goodwill gestures in the light of failures in service from Adult Social Care and CECS.

 

READ THIS PAGE  –  Under ‘About Us’ – OUR COMPLAINT PROCESS

 

• Additionally we have had 4 years of legal action against a care home,and, the NHS Commissioning Board (Mid Essex Primary Care Trust, Central Essex Community Services who took over from the primary care trust and are responsible for the district nursing service). We were effectively forced to settle out of court, which is not what we wanted but had no option, for a joint payout of £28,000. A heartrenching decision to accept as we wished to go to court to receive a judgement against the parties concerned.

 

READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE – OUR EXPERIENCE OF TAKING LEGAL ACTION to follow

 

EVENTS AND HAPPENINGS TO MUM AND US AS A FAMILY

These are additional ;isted areas outside the main story to give you awraeness of some of the events that can happen and did happen to us.

 

• Sent to home miles away from mum’s or our home. Falls and no doctors called.
• Because mum spent respite in a care home when she was able, we assumed it would be okay there again . It wasn’t.
• Had to worryingly repeat information time and time again to carers, who didn’t seem to now the basics of what was wrong with mum, her needs.
• Homes seemed reluctant to call out GPs, when we asked for her condition to be checked it seemed frowned upon.
• GPs seemed unconcerned about her pain etc, didn’t seem to take thing seriously on call outs.
• GPs gave us a feeling of interfering in or trying to control mum’s care, when there were genuine concerns and there was no doubt mum wanted us involved, as she always had done as had always been the case.
• GP out of the blue telling us she may have 3 months to live! She lived 1.5 years and died of a heart attack not directly related to these referred to conditions. He may have been right had we not moved her!
• We were told the pressure sores were unpreventable but we healed all of them.
• Mum was so weak and grey looking, we just assumed that it was all due to her deteriorating condition which is what we had been told. When all professionals around you are telling you the same thing, you would hope that is right, our gut told us something different.
• Family asked to be present at pressure sore dressing changes, we were asked “why?”
• Mum a) developed pressure sores, b) they got worse and worse c) she ended up with infection not detected until our intervention d) she had not been re-risk assessed and risk assessed adequately or in a timely manner as by law. e) all assessment and monitoring as by law were not carried out such as nutritional risk assessments. f) she had not been turned g) she had not been provided an air alternating mattress in a timely manner.
• Mum wanted us present at every dressing change of her heels after we had discovered what she had been going through, it was then we realised what may have been happening without our knowing regarding debridement, cutting away of necrotic “dead” flesh. Horrendous. We promised her no-one would touch her feet again unless we were present. This was agreed by a home, then they started not adhering to it.

 

READ THIS DOCUMENT – UNDER ‘ARTICLES’ FROM THE HOME PAGE – “LITIGATION PROCESS – EXPERT COURT WITNESS – NURSING REPORT” (to follow)

READ THIS DOCUMENT – UNDER ‘ARTICLES’ FROM THE HOME PAGE – “LITIGATION PROCESS – RESUME OF AN EXPERT COURT WITNESS”

READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THIS SITE – “LITIGATION PROCESS – ROLE OF AN EXPERT COURT WITNESS”
• Unadequate checking whether urinary tract infections are cleared up.
• Homes unclear about what symptoms can be caused by having a urinary tract infection.

 

READ THIS DOCUMENT UNDER ‘ARTICLES’ ON THIS SITE – URINARY TRACT INFECTIONS – WHAT YOU NEED TO KNOW

 

• We did all we could to work with homes and all they seemed to want to do is control all situations and not listened to knowledge we had as a family or the care history.
• No one seemed to be listening to us properly when we noted mum not well, not recovering, having a job sitting up straight, when we were trying to explain unusual behaviour for her. No-one was reacting.
• We were not communicated with adequately regarding mum’s condition by the hospital, home or by any doctors or GPs.
• We were given wrong information by a GP, we subsequently confronted him about, he struck mum and me off his list for causing him distress!
• Mum fell out of bed, she said she hit her head, we were not told this.
• When mum began to seem to need to be hoisted and other more hands on care, this was not explained to us, when we questioned her deterioration and what was happening. At one point it was suggested that that we need to accept the situation and her deteriorating conditions. I don’t suppose many of us would be able to stand on, or feel very well, with grade 4-5 pressure sores on our heels and one heel infected?
• Strange things happened like staff pulling me to one side saying to me privately and quietly “I’d get a second opinion” after seeing the GP, which was worrying and bemusing, We did this it did but it made not a difference.
• Mum seemed to have pain, be deteriorating and we began to be treated as an interfering family. Care homes seemed more concerned about keeping us ‘out’ as a family than making sure basic care was in place.
• Whether homes were small, large, near to us or further away. Even when we were there every day, we saw poor care.
• As mum became very vulnerable, meaning needing help to go to the toilet, hoisting, have cognitive impairment, need help to eat and drink etc, needs were beginning to be ignored or not adequately dealt with. Please beware should your loved one go from reasonably independent to very vulnerable over time.
• Despite questioning care, home moves, social services saying this would not continue to happen we continued to see poor care and not being listened to as a family, no empathy with what had happened in mum’s care journey.
• Mum sustained a brain haemorrhage in a home and no GP was called.
• Mum suffered a seizure. She was admitted to Broomfield hospital. We were terrified. We observed unconcerned staff, incorrect information being passed from one part of A&E to the other, lack of communication with us, frightening. This is when we discovered she had a brain haemorrhage. Admitted to a ward, we received lack of information again, things not making sense, one staff member saying something one day and another saying something else the next.
• We were told mum would be looked after when we moved homes, to trust them by the manager, that this and that would happen, that we would be welcomed to be involved in mum’s care, we made sure we asked all questions and knew what was happening, we were a family who would help wherever possible and be visiting every day, we were pleased we were going to receive good care now. It didn’t happen. In fact we felt we were being closed ranks against because we would not accept substandard – and neglectful care.
• We brought nice things we knew mum would like to eat, as they gave her things sometimes she didn’t like, this was frowned upon. We brought lovely smoothies and all manner of things to help her get stronger and as better as she could be, to get over infections and maximise her potential. It felt like we were being treated as if this was all fussing, or that she’ was doing fine, and we should leave her alone, she wasn’t doing fine.
• A home unbeknown to us raised a S.O.V.A. against (safeguarding of vulnerable adults order) against Katie Warren, yes you read it correctly, questioning ‘my’ attitude we believe because we were questioning their care. This followed a complaint put in against them with social services If we had known what one of these was at the time, we certainly would have taken out one against them! These things can be happening behind your back, without your knowledge, be aware.
• Our name felt blackened, when we were simply looking after, and out for, our loved ones best interests by highlighting poor care because we were concerned. This is distressing. We discovered this S.O.V.A. when a solicitor’s request for Notes revealed it, the comments are not true within it.
• Carers pulled us to one side whispering to me suggesting mum had not been right all day, and that we should ask to get a urinary tract infection test done. I said why aren’t you doing that? No answer. Our first introduction to Urinary Tract Infections (UTIs) and how absolutely serious they can be!

• Mum’s cognitive impairment from brain haemorrhage did not seem to be being taken into account in risk assessments.
• A care home refusing mum back after visit to hospital because of family raising concerns.
• Care home assessments being carried out with the family’s knowledge when mum specifically requested the family’s presence.
• Mental capacity tests carried out without the family’s knowledge and without offer of independent representation. You have a right to know and to be present or have an advocate present. Please make sure you have a Power of Attorney which expresses your relative’s wishes.

READ THIS DOCUMENT – UNDER ‘ARTICLES’ AND VIDEO INTERVIEWS – WHAT IS A POWER OF ATTORNEY BY SUE MALLETT, SOVEREIGN ESTATE PLANNING
• Tips we learnt: there is such a thing as a tilting in space wheelchair to help move the position of someone with pressure sores, we got it. There are air alternating cushions to sit on in armchairs – a nursing home should have provided this, they didn’t, we bought them. There are nurses called Tissue Viability Nurses that are the experts in pressure care, ask for a referral.  Tie your loved ones call button to a soft flat soft toy that will go on the arm of a chair on on their lap, somtimes they won’t remember the name for call button but they will the animal.
• We met some lovely carers in homes, many not so.
• We met a nurse admitting they were overstretched and resources tight after she had screamed at me one evening when I asked why mum had not been taken out of bed and asked could they not hear her calling out very loudly distressed?
• We met staff who seemed to have some empathy with us as a family and our concerns, then, some of these staff seemed to be replaced by for example other social services workers who didn’t, or some carers in homes had unexpected attitude changes towards us, and were suddenly not as open and friendly.

 

SOME OTHER THINGS WE EXPERIENCED AND SAW:

New and different carers unaware of mum’s needs
Missing of heart medication
Denial that she was on heart medication
Medication that had not been ordered
Flat air alternating mattresses
Unplugged air alternating mattresses
Mum given food she didn’t like to eat, despite family being asked to provide list of foods she could eat, and liked

If your loved one has difficulty eating get referred to the SALT team
READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THE HOME PAGE – S.A.L.T. TEAM – CAN IT HELP YOU?
Food no-one would want to eat
Protective pressure care booties put on upside down when seams rubbed on mum’s wounds
No footplates on wheelchairs (causes lack of blood to the feet)
Wrong dressings being put on pressure wounds, adequate supplies of dressings not ordered
Carers changing pressure care dressings unqualified to do so
Told that “there is nothing that can be done” about pressure sores, “it’s just something that happens to old people”
Tissue Viability nurses not called in
Tissue Viability nurses care plans, advice and prescriptions not followed

READ THIS DOCUMENT – UNDER ‘ARTICLES’ ON THE HOME PAGE – WHAT IS TISSUE VIABILTY? (Article to follow)

Dermatitis all over head

Dermatitis 12
Urinary tract infection after urinary tract infection contracted

Unsafe practices by nurses and carers
Mum found in bed soaked with urine
Pressure care turning charts not in place
Pressure care turning charts not completed correctly
Tests and assessments done without family present despite specific instructions from mum, Renee
Professionals visiting mum without family present despite specific instructions for this not to happen
Staff arguing against NICE Guidelines for management of pressure care
Differing opinions between carers and nurses
Receiving no pain control when debriding pressure wounds (cutting away of dead flesh)
Staff in care homes admitting there is not enough staff.
Nutritional charts not in place
Poor entering of information on charts and care records
Personal remarks on care records about family instead of what the family had concerns about!
Dirty kitchens
Nurses pointing in family’s faces and raising their voices
Mum’s leg bashed on hoists and put to bed bleeding – and denial of it whilst we were standing outside the door (see photos) – This led to a nurse having to always be present when mum was hoisted
Bruising all over legs
Incorrect sized slings being used
Slide sheets not being used
Other residents using mum’s commode in her room
Clothes washed and stretched out of shape repeatedly
Other resident’s clothes put in mum’s room
When we arrived at homes we found:

Flat air alternating mattresses
Unplugged air alternating mattresses
Mum calling out loudly and continuously in distress from her bed because she was in pain and no-one was coming or she wanted to go to the toilet.  Once when family asked what’s happening we were told “she wasn’t doing that before you came”.
Hearing mum crying and screaming outside whilst in bed through the outside of the building because she had been left in bed because they were ‘busy
Left in the toilet falling to one side when she was unable to straighten herself.
Couldn’t find mum at lunchtime, had been left in the toilet alone whilst very vulnerable and shouldn’t have been, with cognitive impairment and couldn’t always find the call cord
Arriving to mum crying that “they” had changed her painful dressings again without us there as she specifically requested and we promised we would be
Mum frightened telling us she had been inappropriately handled by a carer, police were called in.  Katie spent all night by her side until this man she was assured would never be near her mother again.
Not ready on time for hospital visits.
She was so weak one day on a hospital visit we took her to that we kept her at home with us, and wouldn’t take her back, and phoned and complained to social services about this home and said they need to find a good home for us.

IN CARE HOMES

Before Reneé came home, could not move hands, didn’t know what she was doing on her birthday.

Heartbreaking.                 Manor lodge so out of it before left care                                                   Boucherne half dead cropped

COMING OUT OF CARE – JOURNEY TO FAMILY HOME

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Shortly after arriving home after coming out of care – still weak, family encouraging mental stimulation, independence (not being fed) and fresh air and sunshine.

Picture 142mum Just got home At home mum

 

HOME WITH FAMILY FINALLY RECOVERING AND HEALING              mum in red top smiling

 

 

Renee  LOOKING BETTER AND BETTER

 

 

 

 

IMG_0062   MUM AND “BEAR” THE FROG WITH CALL BUTTON

FInally safe, mum with “Bear” always by her side fixed to her call bell.  Never to be without a call bell again, with all the equipment she needs, not wet, not cold, not in pain, not suffering, healing in the family’s care.  Thank God.  24/7 care began for the family.  It makes us cry with relief now, to look at this photo, as it did when we took it, after the fight to get her home and safe.

 

 

 OUT OF CARE – AT HOME SAFE, WITH FRIENDS

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Encouraging movement, reading newspaper, reading subtitles on TV, magnetic board quizzes, dexterity games,  socialising with friends visiting, drinking and snacking from her ‘mooing cow’ biscuit barrell full of cashew her favourite cashew nuts which used to make her laugh.  Asking to see the birds in the garden out of the window which she loved giving them names.  Maximising the potential with loving care.  We were told: she is dying, doesn’t eat and drink very much, is doubly incontinent, has to be fed, and her wounds won’t heal – wrong.

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Reneé and Katie getting out around the shops            Visitors who supported us,

in her special tilting-in-space wheelchair.                    glad to see mum home, bringing flowers

 

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Out at Maldon Prom.  One of the few times we           At the local village pub garden in the sunshine.

could get out together when we finally got a

specially adapted vehicle, with lifting equipment.

IMG_0622                              mum in cowboy hat

Visiting Action for Familiy Carers in Maldon                      Finally having some fun trying the hats on a shopping trip.

 

 

Along with the facts of our story you will find on this site:

  • Our Documents for you to read
  • Extracts from documents that we have obtained
  • Photos – of Reneé, and of Reneé’s wounds (please be aware there are photos here and on this site you may find distressing).

 

OUR COMMENTS

No elderly person and their family should go through an experience like this.  This story does not go any way to describing all the things we saw and went through trying to understand this system, to understand why, we believe, we were vilified for raising concerns about wounds nobody should accept, for asking questions about their loved one’s care.

It can’t explain the sleepness nights, waiting for phone calls in case some thing else may have happened, it can’t explain the surreal situation when nobody listen to you as a family and pain that causes inside, it can’t explain the utter feeling of terror and complete lack of influence in improving the poor care one is seeing.

 

 

      THANK YOU SO VERY MUCH FOR READING RENEÉ’s AND OUR STORY

      MAY THIS SITE HELP YOU

      PLEASE TELL YOUR STORY TO HELP OTHERS

      PLEASE READ OUR COMPLAINT PROCESS