H. CASE CONFERENCE 04.11.09

Here because not happy with care – from all these services in this room, giving info, preventing condition – esp. nursing care received. Appalled.

History

March – fell over, admitted Broomfield, in there one week. Broke arm in 2 places, cut face open, bashed head.

Hospital social services didn’t need to be in there, will move to nursing home to recover for rehab, never happened sent to care home other side of Braintree, Old Forge.

She was immobile, couldn’t wash, feed herself, get in and out of bed without help, had 2 falls whilst there (no consistency of medication there), no pressure care advice. Physio appointments but at home no-one implemented it but us. Due to medication being missed and falls wanted her moved.

Social Services – No concern about care just placement team, after 9 weeks pressurized into deciding on permanent placement in home when hadn’t even recovered yet, gave us a few days to decide. No choice of home. We had to take in on ourselves to visit and find homes.

x Care Home was not available, Care Home was, she had been on respite there accepted to go there due to pressure as we wanted her nearby to monitor what was happening. Disaster.

She walked out of XXXXXXX Care Home on my arm but still immobile in bed, needing help with eating and toileting. 1 week in XXXXXXX Care Home has back pain/seizure. In Broomfield who was uninterested. No information forthcoming, no pressure care. GP uninterested in XXXXXX Care Homer, had second opinion. Still uninterested, wasn’t monitored, no pressure care, told no continuing physio available, had trouble breathing, had to intervene to get GP interest. Mobilisation a lot worse, getting confused.

In Broomfield, told she had brain haemmorage, caused probably 3 weeks before at Old Forge. Arrogant consultant, no explanations, just wanted her out of there. Argued about ongoing care.

In XXXXX Care Home – medications were running out, getting them wrong, bad hygiene, no monitoring, urine infection not picked up and was getting worse. We took her out one day and wouldn’t take her back, called GP home, XXXXX Care Home had a room come free. I demanded her moved.

In a few months gone from walking out of one home, to leaving XXXX Care Homer hardly being able to weight bear, through lack of monitoring, physio, advice. All we have been doing is fighting to get advice.

XXXXXXX Care Home – When we got in here expected now to get more stable care. A better home and better care. Some consistency of care/advice. Ann the manager said, leave it in our safe hands now, don’t worry.

They said they expected to try to get her walking, but were told no physio is available still, which should have continued, have to fight for, a little bit late. She has never recovered from what we thought was only a urine infection, no proper rehab during all this time from breaking her arm.

This history is important as to why we are here today – events that had led up to today, why we needed to get her in somewhere where we expected to receive more vigilant care.

So when the home says we are anxious or “trust us now”, maybe you realise why we are anxious and don’t have that trust because nobody/no service has helped or advised us at any time properly.

Only way we get advice is constantly to go on and on at service to get help, nothing is pro-active or preventative – even in this home and the district nurses, it is all reactive, everything we need to initiate. We were desperate for her to be looked after and monitored properly and this has not happened.

Dr XXXXXXXX – we tried to get you to come back and assess her after you visited at our home because she was still not right, not continuing to improve after urine infection. XXXXX Care Home did not know what she was like before, didn’t see her previous to her having deteriorated from what we thought was only a urine infection. And yes, Ann, she was confused.

Dr Mann saw her instead in XXXXXXX Care Home after I requested her to be assessed, however he saw her out of agreed time for me to be there. Dr Mann saw her in XXXXXX Care Home who didn’t have the same concern as you did and said she was okay. She wasn’t – she had deteriorated, this should have been picked up and her risk assessed.

Wasn’t until late August I called Dr XXXXXXX in to find out what was happening, to review again her medication and treatment. She was now so much worse, couldn’t read, walk, coordination deteriorating, hardly any mobility, confused.

And by this stage having tumbled in her room we were told.

No-one had been forthcoming on the consequences of her condition, I pushed Dr XXXXXXXXX to tell me what was prognosis, he said could die at any time from brain haemmorage and small vessel disease getting worse and worse, probably had small strokes, she is deteriorating and because of this suspects 3-6 months to live, he had seen people last 1-2 years. This was a shock, unexpected. We had not been explained of this prognosis and not informed at all.

So we had to deal with: a considerable worsening condition by the time we got into XXXXXXXXX Care Home, to then a prognosis like this, we were shocked.

We asked about taking her away for a last holiday to have quality time together for the last time, Dr advised, do it now.

WHY WE ARE HERE TODAY

We took her on a short break 3 days over bank holiday weekend 29 August – 1 September. Ann knew why and when and what we were doing. Got a disabled caravan, took wheelchair, commode, cushions, nutritional food – everything that we could do for her.

After first night, she complained about her backside and we also found plaster dressings slipping off on heel, presented with weeping open wound, pungent pus and smell, didn’t know what we were looking at.

No dressings were given to us, no advice, not been informed at all about that this had been happening and the severity of foot or her backside, other than wash her backside and given a spray for it.

Now presented with an open wound, had to visit pharmacies on a bank holiday weekend to see how we could deal with this. We were shocked and nearly brought her back. My father-in-law who joined us to help us lifting her (was not advised how to move her properly otherwise we would have got a hoist or whatever) brought booties we had of my father’s, we had to make up dressings. The memory of the last holiday we will have with her will be of this. Now we were really worried, after we had been told to trust the home.

Can’t she have booties on, we’ve been using my Dads, to be told, oh yes, we have a cupboard full of them, so why haven’t they been put on?

DN report - 13 Aug right heel Grade II sore, Left heel red grade I

We did not know anything about this. Don’t you think we should have been informed?

The DNs saw her on 19, and 22 August and the home records dressings coming off 24 Aug, new dressings applied 26 Aug, and sore bottom almost on verge of breaking down 28 Aug.

We were allowed to take her away on Sat 29 Aug with no advice AT ALL. THAT IS NEGLIGENT.

Bringing us 2.9 dressing off, Grade II in crease of sacrum, Grade I to right cheek. Hardly surprising as we were not informed by of the nursing needs of my mother. Clear documented instructions in any event affecting nursing care should be provided by the DN team, so relatives at all times know procedures.

Is there a Nurses Communication Book??? So why haven’t we been told about it.

I was told my mother does not need nursing care every day, no more than 3 times week – but she has been getting more than 3 times a week, infact - Sep 2, 3, 4, 7, 10, 12, 13, 14, 15, 16, 18, 20, 21 ,22, 23, 24, 26, 28, 29 (19 dates not 12),

Oct, 1, 2, 5, 7, 10, 12, 13, 14, 16, 19, 20, 21, 23, 26, 27, 28, 29, 30, 31 (19 dates not 12), Nov 1. And there is still not due vigilance as far as we are concerned –with inconsistency of dressings, not appropriate dressings (as noted in nursing notes), not correct dressings in situ, appropriate information not given to relatives, relatives having to point out pressure areas not even noted by DNs.

Red Flags before this:

1.  waiting 1.5 hours to be taken to the toilet (we are making tea, cooking, doing laundry we were told). This doesn’t bode well for someone at risk of pressure sores on the backside does it?

2.  Wheelchair – no footplates are used. (Physio advised she must have footplates to adjust sitting position, to not cut off circulation in legs) (Govt guidelines about positioning).

Dining room chairs – feet not reaching floor.

3.  Checking urine infections have gone or returned (have to keep asking – all I get was we know when we has an infection and it should be gone by now). Repeatedly have to ask.

4, Body posture –in chair, in wheelchair (later suggestions by by physio, not heeded. (Govt guidelines). Tissue compromised.

5.  Confusion (disagreement with how confused she has been) She couldn’t find or recognise the buzzer a lot of the time in bed, therefore needed regular checking for toileting – all this doesn’t bode well for pressure sore development and prevention. Buzzer not accessible.

WHEN WE COMPLAINED ABOUT HER FOOT we were told “well you wanted to take her away”. As if it is our fault now this has happened?

Even the District Nurse office asking us why they weren’t informed we were taking her away?

SO NOW WE HAVE TO EDUCATE OURSELVES ON PRESSURE CARE

After bringing her back and US discovering the sores and asking what is happening, we are told an air mattress is ordered. I now start making it my business to monitor what is happening, told by district nurse it will take 2-3 weeks, I have to phone district nurse office and get it the next day. I have to find out that surely she needs air cushion on her chair and request it with the mattress. (From XXXXX – manager of district nurses). This all should have happened way previous to this, way before.

I had to question an air cushion, and demand it, not the home, not the district nurses. Why? There should have been earlier intervention to PREVENT what has happened.

She should have been thoroughly risk assessed, someone should have been proactive with someone with reduced mobility in bed and in the chair and with a condition I am told affects her circulation. District Nurses we are told are the pressure care specialists. Someone should have been aware of signs of tissue breakdown. A pressure care specialist nurse should have been brought in, now, that I have found such a person exists, but before, when I question why this has happened, I get “I don’t know”. Pressure care specialist nurse brought in earlier.

There has been emerging risk and its not been picked up or anything done in a timely manner: I had to notice her left foot start and her ears.

Govt guidelines are clear:

1.  Patients should be given information so they can understand about making choices for treatment, carers should be involved in helping us make decisions.

2.  Assessment should be carried out on first contact with the health professional.

3.  Healthcare professional should monitor movement and provide a repositioning timetable. Airy-fairy – not clear.

4.  All surfaces need to be considered that the patient comes into contact with and mattresses and cushions accessed for day and night.

5.  Skin should be assessed regularly for sign of pressure ulcer development. (Hasn’t been done, ear, knees – told don’t need anything between?, elbows – told don’t need elbow protector?)

6.  Diet – improvements to diet need to be made and supplements may be required. Not received this advice. Don’t like it, not good enough. Not down to me alone (Vits, nut drinks, milkshakes, smoothies), with very strange attitude by home to me wanting to help my mum. Have we had the vits prescribed Dr XXXXXXXX, they weren’t when I went to get them.

7.  Healthcare professional should work WITH patient to decide best treatment and promote healing (Not having to fight for information and advice)

With the home saying “why do you want to talk to the District Nurse?

And District Nurses saying they don’t know if the sores are any better, they’ve only been to see my mum once” (Inconsistency of care). Been questioning dressings.

No advice that there is a nurses communication book, don’t know about daily home notes, til now.

SO we’ve got to hearing my mum agitated and sobbing in pain when I am half way up the stairs (not appreciated the insinuation that it is my presence instigating this and she wasn’t like this before) from her feet on the air mattress. Do you expect me to not lift her feet and then walk out and put her feet back down? Ongoing discussions about this whilst I watch my mum, finally after me taking more advice, XXXXX DN Manager agrees probably best to put very low soft fleecy blanket under ankle, short way up the calf and see if it improves. She informs home, I go in and it is too high with possibility of cutting of circulation. Nothing seems to be heeded, or is done begrudgingly, all I am doing is fighting to get my mother comfortable. Air mattresses do not eliminate total pressure, still need repositioning – confusing information.

DN XXXXX – relieve pressure by moving feet, XXXX Manager of Care Home says not told.

To watching her falling to one side in the wheelchair and chair, to find her falling out of the chair once when we came in because she need adequate support from suitable pillows or a special chair for the purpose that I am told by physio exists.

I try to find out about these things and push for OT help, social worker help and go round and round in circles. OT dept says its OT social services, they say it is the home, the home say it is the GP, the GP says it is OT.