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In an earlier post in January 2016, I reviewed the early stages of my mother settling into a care home which I called Luxury House. Five months later she died, shortly after a fall in her flat at Luxury House, and two months after concluding that she was not safe from falling there, and a day after she had told me she must move to a different home as soon as possible.
It was decided, following evidence at the inquest, that the care home could not have done any more to prevent her fall. The fall is thought to have fractured her spine, but to have been brought on factors like her frailty, her muscular dystrophy, incipient pneumonia, a lack of suitable footwear, and her asking to stop medication which reduced the risk of fractures.
Nevertheless I am left with many questions about the adequacy of her care, as there was much that she and I were not happy about. At her request we had begun a slow process of looking for a better care home.
In my earlier post, I noted many ways in which Luxury House was excellent and stood out from other providers. I also noted some fundamental problems, which I suggested may have been transitional, and which I hoped would resolve with time. Some of them did, but the most serious did not, or even got worse.
My earlier post was based on feedback following a CQC inspection, which the inspector told me was too late to be investigated as part of their report. In fact, their report was not published, but CQC came to reinspect the home a fortnight before Mum died. When I discovered this, I was astonished that they did not contact me or her to ask whether anything had changed. There was no sign of my feedback influencing CQC's report of Luxury House as good. I phoned to ask why, and was able to speak to both the inspector and his manager, but it didn't help. I was told that my feedback would have been taken into account, that they would have sought feedback from residents at the reinspection, and that and they would have got back to me if they needed to. I am left wondering whether (a) they decided my concerns were groundless on the basis of convincing evidence they saw during their inspection, (b) they received comprehensive feedback from a large number of residents and relatives which contradicted our account, or (c) they incompetently ignored our concerns. It seemed to me that CQC's evidence during the inquest, stating essentially that they had inspected the home and had no concerns, exonerated Luxury House from any responsibility. CQC's response to feedback was highly frustrating: first telling me that the feedback was important but too late for a report, then not producing the report for months and showing no signs of taking my feedback into account.
I told CQC that little had changed since January, thus.
Communication remained inconsistent and unreliable, though my mother managed to find some methods that worked better. Staff barely ever read or wrote on the whiteboard that the nurse manager had asked us to buy to communicate with staff. It was amusing to find an unused whiteboard in the storeroom that was part of her respite flat. It remains a concern that it took so many months for her to discover them. Some carers became very reliable in knowing what food she wanted, but food provision, and communication about it, remained poor too. More concerningly, from April to June my mother restricted the nutritional balance her diet even further because of having loose teeth, lost weight and approached an unhealthily low BMI, and there seemed to be no attempt to help her find a diet which would have kept her adequately nourished. Although Luxury House provided soft food when she asked for it because of her loose teeth, the protein content was low and the flavour was poor. Although she found some ways around it, the provision of lunch on days when she was late for it because of appointments remained patchy and unreliable. Communication with health professionals remained unresolved or worsened. The pharmacy was changed, but medication still sometimes took too long to replace, sometimes apparently because messages did not get passed on at some point in the chain. Mum repeatedly received inconsistent messages from health professionals and Luxury House staff about how she was permitted to communicate with health professionals. Promised re-referrals were not all followed up, or had unsatisfactory outcomes. For instance, a promised mental health referral never materialised. The GP surgery told me they tried to contact Luxury House several times about a referral faxed through in April (several months after Mum had agreed to it) but never had a reply.
Why didn't I resolve this by talking to Luxury House staff? Because by then they had asked me to stop communicating with them altogether, and asked me to stop Mum raising issues with health professionals that she had already raised with them, because in the nursing manager such issues had been resolved, and she would not discuss them further. Never mind my assertion that we did not share their view, felt that the issues were unresolved or had not been addressed to Mum's satisfaction. They had been "dealt with". Therefore it would be wrong for us to raise them again.
That is what concerned me most and finally convinced me that we coud get no further with Luxury House and would have to try elsewhere. The final request to stop communicating came thus. With the care advisor for the Muscular Dystrophy Society, we had been trying to arrange regular meetings every few weeks involving Mum, my sister or I, and senior carers from Luxury House, to help with Mum's transition there and to resolve problems that had arisen. After a few of these meetings Luxury House refused to send staff to them and sent the message that they did not need to come, as Mum could ask them for whatever she wanted whenever she wanted it.
I am much concerned about what seems to me a dangerous unwillingness to listen to concerns and the risk it poses to other residents safety. In my professional work as a child clinical psychologist, I have often worked with difficult systems where communication has broken down. Resolving an individual's problem often involves liaising with people in the other systems they interact with. I have rarely come across a system where service providers have refused to continue talking to the families of vulnerable service users. It is difficult to know how to resolve problems in such circumstances. My mother stayed on at Luxury House only because it was not possible to find a safer care home quickly, and she prioritised dealing with other health issues, seeing friends, and a last visit to her home, more highly.
What particularly concerned me about their refusal to communicate is that it came in April just after Mum had had two falls in her flat in the same day. That time she didn't break any bones, but she did go to hospital and came back with such reduced mobility that she needed two carers to help her for a few days. I have no idea whether anything else was put in place to help prevent future falls, and I saw no sign that anything was.
Mum's opinion was that she would have been much safer if she had been allowed more grab rails and support poles in her flat. She wanted a pole to help her lift herself from her dining table to her rollator, which she could supply from where she'd had it in her bathroom. She was refused on the grounds that it would be a trip hazard. It seems very ironic that she died following a trip, though there could be no attributing it to her lack of a pole because that's not where she fell. A physiotherapist refused to assess her for grab rails, saying it was the home's responsibility. Luxury House eventually put up two grab rails where she'd asked for them on external walls, after many weeks' delay, but would not put up any on internal walls because they were not strong enough. Occupational therapists commented at the inquest that a care home should be fit for purpose, though her care advisor's view was that grab rails, and specifically the pole, would not have made her safer as she had lost too much strength in her arms. When I started talking to other care home managers about the possibility of grab rails and poles, they seemed more accommodating. It may have been possible to resolve in another way the safety concerns which led her to ask for support rails, but there was little willingness from Luxury House to do so.
I am aware that my mother was a challenging person to care for. Though I never had a response to questions about exactly how much time she was using of the equivalent of five hours' daily care she was paying for, the impression I got from management staff was that she and her family had taken up a hugely disproportionate amount of their resources already and they needed to place limits around what they could offer. They may have been quite right. But Luxury House prides itself as being different from other care providers; it charges very high fees; there are more challenging service users in existence; some of the problems that Luxury House failed to resolve are common among care home residents; other care providers found ways of meeting my mother's needs better despite the challenges she presented. A care home rated as “Good” in all areas ought to do better than this, and the difficulties revealed by how they responded to my mother makes me concerned about how good Luxury House is with other residents. But given recent reports about care homes evicting tenants, or barring relatives from visiting, perhaps it's just as well that we didn't escalate our concerns any further. Or would we have moved further forward if we had made a formal complaint? Were there other ways of resolving the impasse between us and managers?
Inquests are not an exercise in attributing blame or fault, but can make it clear where omissions in care have been made. No clear evidence of omissions made by Luxury House emerged from the inquest, despite their putting a senior carer forward as a witness who was poorly briefed and unable to answer many questions. The coroner asked the general manager, who was also present, to step in the witness box. Though she didn't know all the answers either, and many of my questions were deemed not relevant to the inquest, I felt better about the prospect of getting in touch with her with some of my unresolved questions and concerns. I plan to, and I will see what she has to say.
Mum's other main reason for wanting to move was her concern for the staff. She learned from carers that, despite the high fees, there was too much pressure on them from managers to get through care tasks and reduce costs. I can understand how Mum would have heard a lot of this if she was taking up more time than could be spared her. There was a fairly high turnover (although retention of activities staff improved). One might expect that it's no different in any other care home. And yet Mum recalled getting not a whiff of it in the place where she had stayed for respite before, a Methodist Home where staff retention seemed to be high, and many staff had been there for years. We looked at another Methodist Home which also reported high staff retention. Who can tell?
Mum never got to move to a better flat. One became available on the floor below, where she wanted to move so that she could get outside directly through its french windows. But then the question was raised as to how staffing would need to change on that floor (which had lower staffing ratios) to accommodate her. The general manager said she would need to recruit more staff (it wasn't clear why they could not be reallocated, as staff often were between floors), and couldn't say when or whether that would be possible. Mum got to move her own furniture in, and her own positioning bed, but she hardly got outside as she had hoped to. There was no sign of activities staff being available to help her, despite the activities programme listing regular one-to-one times and walks with residents. She tried an exercise group run by staff but found the room (which I believe had no heating) too cold. She got to church services only a few times, both in and out of the home. She hardly spoke to any other residents on the few occasions she did join in other activities, and found those she spoke to could not hear her, or she couldn't hear them. To my knowledge she never met the general manager, who had promised me that she'd look in on her sometime. So much of what Luxury House promised was not accessible to her.
But it wasn't all bad. I have to recall that Mum never wanted to live in residential care in the first place, and disliked it on principle. Considering that, she didn't do too badly. She came to accept that it was necessary, and agreed to look at alternative care homes, rather than looking for ways to do the impossible and go back home. If I had known she would only last a few more months, I might have let her stay at home with all the extra intensive support that she would have needed. I even considered letting her go home to die on the day before she died, when I was told she might have weeks left to live.
Possibly, staying or going home under any circumstances would have been madness. As I've made clear, her last few months in residential care were very far from perfect. But they also gave more to her and to us than she could have had at home. She saw more of local friends than she'd seen for years, was able to pay them more attention, and have better conversations. She had better conversations with us. Her 8-year-old grandson, who had grown to hate visiting Grandma in the previous year or too, came to tolerate and even sometimes like it, and chose to visit her on Sundays rather than stay at home, even if it was mainly to read the Radio Times. She agreed to celebrate her 80th birthday with friends at her flat, and enjoyed it: in recent years she'd usually said there wasn't anything worth celebrating. I wasn't fighting against her wishes so much as I sometimes had been, but was more allied with her in trying to make things work for the best. And not all the specific benefits of Luxury House were lost to her. Occasionally someone came and played the violin to her. She had space for the furniture she wanted. She got extra care support easily when she needed it. She made a small number of complaints about bad treatment from specific carers; Luxury House took them seriously, and removed those carers from her care. She made some good relationships with some of her carers and was determined to teach one of them French. Though it wasn't ultimately at Luxury House but in hospital, she had a visit from her oldest friend who she'd not seen for several years.
Nowhere else would have given her the space and care time that she needed in this transition period, if it had become a transition period. In looking for a different care home she was aware (at least I constantly reminded her) that she would have to sacrifice the space and time she'd had for what she'd hope to gain: better communication, better food, better staff retention, and a better relationship with management. It wasn't where she wanted to spend her last days, but she and we had better memories there than she might have had if she'd stayed at home. For that, despite all its problems, we can thank Luxury House.
For a final update, click here
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