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A late review
Last week the Care Quality Commission came to inspect the care home where my mother lives. They put up a poster on the front door asking for feedback. When I could find time, a couple of days ago, I sent them some. The inspector phoned to say it was too late to include it in the report. They could pass it on to the home, or the local authority. I wasn't happy with doing either. We are still trying to establish a good relationship with the home. Not everything is going smoothly, but we hope it will improve with time. Sending feedback at a time of inspection seemed right, but sending feedback for action doesn't seem right when it's a work in progress. I'm frustrated though that I spent three hours writing something that came to nothing. Posting it here at least does something else with it. The style is a mixture as it was written originally for the inspection report and I've just adapted it a bit. Here goes.
My mother moved into this care home (which I'll call Luxury House) after living with a disability in her own home for ten years and receiving intensive home care there. She wanted to stay in her own home but it was becoming unsustainable and unsafe. It's a very costly care home, and we chose it because it's the only one we could find which is able to provide enough physical space and care time to satisfy her. She has a one-bedroom flat an ensuite shower, a phone, and even a small kitchen, and can buy up to five hours' carer time a day. Why so much time? She found it very difficult to leave her own home as she had grown used to intensive domestic care there. When we tried moving her into a room in a smaller care home where her care was rationed alongside other residents, it was too much for her to bear. Luxury House allows her more space and care time to help her feel her care needs are being met.
Luxury by name (so to speak)
Luxury House has been very flexible in allowing my mother to stay in the room she first moved into for respite until a ground floor room (where she'd prefer to go) becomes available, and allowing her to keep the furniture that was provided there until that time, or bring in her own furniture as she wishes. Luxury House has a manager dedicated to liaising with relatives, who has been good at understanding her needs, and the needs of people moving into care homes in general, advising us on how to help her make the transition, and helping her keep financial costs down. She is an exception to concerns I will mention later about senior staff.
The provision available at Luxury House is outstanding. In some ways it feels more like a 5-star hotel than a care home. Shared living space is laid out to encourage small groups of residents to meet and mix - so very different from the large day rooms of many care homes. My mother is yet to meet many residents but I have met several who are lucid and friendly.
Bad smells are hard to find around the building - at least on the first three floors. My mother's flat is cleaned thoroughly every week and kept fairly clean daily.
An extensive and varied activity programme goes well beyond the often stereotyped, half-baked, or patronising activities on offer in some care homes, and offers more chance of activities that my mother would actually like to go to (although she has not managed to go to many).
The maintenance team is excellent and has solved many practical problems with equipment, fixtures and fittings that have arisen or which my mother brought with her when she moved in.
The restaurant is well laid out and accessible to visitors, who can eat meals there at a fixed price. Christmas Day's meal was priced the same as normal meals and so was a bargain for visiting family considering the normal cost of Christmas meals. Mum gets room service, and support to eat food kept in her own kitchen. It is helpful that the kitchen has been able to source some challenging items such as lactose-free milk and occasionally soft cheese. She's even put on weight since moving in (a good thing).
There's a large open plan reception, with a helpful and welcoming receptionist available 12 hours a day. The friendly Manager sits in an office by the front door with an open door and is friendly and welcoming too.
Clothes are well-laundered and ironed and mostly seem to return to the room in reasonable time. Respite residents' clothes are washed in separate bags so there is initially no need for labelling. A labelling service is offered for permanent residents, though in practice we have been told for the last two months that the laundry is too busy to provide it. There's even a free washer and dryer available to residents and their relatives to do their own laundry, though with just one washing machine and dryer (as far as I'm aware) it took several repeated visits to find the washing machine empty.
In many ways the care staff have been very accommodating of Mum's rigidity and routines. In the past she has had issues with some home care agencies in the way she takes and needs assistance with using prescribed and non-prescribed medicines and creams. Long story - another time. Luxury House had a similar difficulty, and thankfully found a way around it by allowing her to take responsibility (as she has mental capacity) for self-medicating. The best thing of all was that care staff were willing to try and take over the care management and housekeeping role that I have carried out for the last 10 years. It was such a surprise that they were willing to do this that they had to tell me to stop trying to. I'd been on the phone to various staff for weeks after she arrived to try and make things run smoothly, and especially every time she told me there was a problem that wasn't getting resolved. We didn't realise this was causing more confusion and mixed messages and taking up a lot of staff time. It was good that they negotiated a difficult process of persuading me to back off and let them get on with it. They've looked at ways of solving problems that have arisen, and providing multiple ways of communicating (eg using a whiteboard in Mum's room, arranging meetings with keyworkers and managers, providing lists of internal staff phone numbers, responding to phone calls and emails, as well as making call buttons accessible). Most of the time I hear or see that care staff are kind and patient. Mum reports that some are very good at understanding and remembering her needs. Checks are scheduled every few hours to make sure she is not left alone for too long (usually she'll call someone before then anyway). She asks a lot of carers in both the time she takes and the way she asks care to be delivered. On the whole, largely because of the care time she's paying them for, Luxury House probably meets those requests better than any other care home would.
They made great efforts to provide her with furniture she needed while she was staying in respite, and haven't asked for it back yet.
Spiritual needs of Christian residents are (partially) provided for by having regular services in the building.
It is encouraging to see well-attended residents' meetings with minutes on display near reception.
Both senior and junior staff are generally polite, friendly and helpful.
The gardens and grounds are very well presented and good for walking around, with benches well placed at frequent intervals. The opportunity for ground floor residents to have some of their own garden space is unusual and welcome. Residents are encouraged (actually, after they move out of a respite room, required) and helped to furnish rooms with their own belongings and furniture. Rooms can be locked and give residents much more privacy than they would have in many care homes - though Mum only got it locked after she complained of a confused man wandering in apologetically one night.
Most of all, the care has been very successful in improving Mum's general health, condition, weight, safety, and quality of life, compared to how she was in her own home, and paid more attention to considering her mental health needs than other agencies have managed.
Luxury House has many more good points which I've forgotten because we've got used to them. It really is a class above almost all of the 30 or so care homes I visited last year.
So what's wrong?
Mum has full mental capacity (ie she's got all her marbles) but is severely physically disabled and sometimes struggles to retain what she's been told as she may be stressed, tired, in a hurry, cannot see or hear well enough, or (especially) is unable to make notes about what she's told. This inevitably affects communication with staff.
Communication is a concern. As this is a large care home with several departments, it's not usually possible for residents to communicate directly with all the staff responsible for their care, particularly managers, kitchen staff, housekeeping, maintenance. When we tried to communicate directly with these staff we were told that this was taking too much of everyone's time and it would be better for my mother to channel all communication with other staff by phoning the senior carer on her internal phone. But the senior carer's number is often not answered as she may be attending other residents or on a break. My mother tried passing written messages on through carers but the response is often unclear: my mother will say she has had no response or acknowledgement of the message. Staff may later tell us that they are following up her requests and that it's not helpful that she repeatedly asks them; or that they have given her a response when she has told me they haven't; or that they did not receive the message sent. It was suggested that we buy a whiteboard for her room to improve communication, so messages could be written for staff and staff could respond. My mother is unable to read the messages and it is rarely clear whether staff have read them or what action has been taken; staff are reluctant to write on the whiteboard. We were also encouraged to write notes for staff on post-its in the room about how my mother likes things done, where she likes items put etc. Sometimes notes are read and sometimes they aren't. The manager has put a note on the door asking staff to say their names to my mother when they enter. Few do. In other words, the systems of communication appear unclear and inconsistent or unreliable.
Communication regarding food often appears inconsistent. My mother eats a very restricted diet for various reasons - some of them more legitimate than others, I feel - but also has a large appetite for food such as white fish, potatoes, and root vegetables. At the home's suggestion we have provided a detailed lists of foods she can eat or which would be worth trying; I have also spoken to the kitchen and food procurement managers, who have assured me that carrots or other root vegetables are normally available. Despite this, after four months provision is inconsistent and often does not follow the list. Main meals may arrive with one or no vegetables, or with vegetables or skins (on potatoes, fish etc) that she are too tough for her to chew, or with smaller portions than she prefers. She has found that some carers are better than others at remembering what her preferences are. Also my mother is extremely late in eating her meals, which are usually cold by the time she eats them. Staff cite health and safety rules as not allowing them to keep meals hot on the trolley beyond 1.30pm nor to reheat them. Although staff have said they are keen to help her eat at more normal mealtimes, and her mealtimes on the whole are much more normal than they were at home, there is little to help her eat hot meals in the interim.
There is also little help in varying and extending her diet. She says the vegetables are overboiled and tasteless, having too little seasoning. She cannot easily read the menu brought to her, has asked for a large print menu but is told they will not provide one. She is unable to eat most of the items offered on the evening and breakfast menus, eating gluten-free bread (chosen for its softness rather than a gluten intolerance) with tahini and cashew-nut spreads or lactose-free soft cheese. The kitchen has struggled to source most of the teatime items, and to provide fresh lactose-free milk.
I contrast this provision to a smaller and much cheaper home she stayed for respite in last summer, which had fewer sourcing problems, where the cook discussed the menu with her every day, and where she ate a more varied and balanced diet than she had at home, including several foods she had been avoiding for years. There she always cleared her plate and said the food was excellent and easy to chew. Communication within that home was also much better. It seems strange that a home as well-resourced as Luxury House cannot cook better quality food, and adapt their food better to people with disabilities who may need softer food. There sometimes seems to be more attention given to presenting food well than to providing food that a disabled resident can eat. Another resident has commented to me that the food is not as good as it was three years ago, and the minutes of residents' Food and Beverage meetings indicate numerous complaints about food. The plates are too heavy for my mother to lift and Luxury House will not provide lighter plates, despite requests from other residents in meetings.
It's also been disappointing that there is no flexible provision for lunch when taking my mother out over lunchtime eg for health appointments. She has ended up missing lunch, lunch was not kept for her, and the kitchen was unable to provide anything except a small baked potato which left her hungry.
Communication involving health professionals is confusing. We were asked to channel all communications with GPs and other health professionals through the nursing staff. My mother initially found this distressing and felt her independence and privacy were not being respected, especially when staff were present during GP visits. I can see the nursing staff's point, as when professionals have visited more recently, there are sometimes significant differences between what my mother or I think they've said, and what nursing staff say they've said. My mother moved health districts to move into the home and had to be rereferred to all relevant health professionals. Handover could have been much smoother if Luxury House staff had showed more willingness to take advice from the professionals who have known her for many years, or even to trust her reports of health advice she'd previously received.
Communication with the housekeeper is difficult too. The housekeeper is helpful when found and seems to have received messages left on the whiteboard, but seems to be overbusy, and has not answered phone calls nor sent responses to messages. There seemed to be some lack of clarity for at least several weeks about whether houeskeeping staff, or care staff, or neither, were resposible for washing up dishes and carrying out daily cleaning (bins, WC). My mother prefers to have some cutlery and plates washed up in her own room, and has lost several specialist items brought from home after they were taken to the kitchen to be dishwashed, and not reappeared after several weeks. Staff promised to help her unpack and find places to put her belongings, but never fully achieved this.
I have some concern about recruitment and retention of staff. My mother reports several changes of carers and occasionally some who she feels are unkind or unsympathetic. I am aware that several senior staff were new in the last year. Recruiting and retaining activities staff seems to be a challenge, and this is a disappointment given the extensive activity program, which has not yet succeeded in helping my mother with the main activity she is interested in - going outside for a walk.
The home is next to a church. I got the impression on first being shown round that residents were taken to services there regularly. It was disappointing to discover that activity staff are unable to take residents to Sunday services, and that (according to a member of the church) church members who have offered to escort residents were not permitted by Luxury House to do so.
There are constraints about what can be fixed to hollow internal walls, such as grab rails, and my mother feels unsafe in several parts of the flat. Whilst she values having a fridge in the flat, its position means she is physically unable to reach most of its contents. Staff say she is safe accessing the fridge; she may be safe, but the fridge is not fully accessible. She also cannot reach the towels on the towel rail in the bathroom and relies on paper towels. Although there are three very warm radiators in the flat, there is none near the place where it is easiest for her to sit and eat, and she often gets cold there. A positioning bed is provided with controls that are too small for a visually impaired person to read. It sometimes feels as if Luxury House is set up as a luxury hotel for more physically able residents rather than a care home for more disabled residents.
There were problems arising from assisting my mother in taking prescribed and non-prescribed medication. These were resolved by staff allowing my mother to take responsibility to self-medicate, which she can only just manage with great physical difficulty. I appreciate that the issue took up a lot of staff time in the process and was not helped by my mother's rigid routines, I feel that staff could have been more flexible in considering other solutions. We have faced similar difficulties with several care providers previously, and found some of those more flexible.
The pharmacy used by the home appears very slow to respond to requests, and my mother has often waited several days for repeat prescriptions to arrive after they have run out.
From these concerns it will be clear that my mother and I have had some difficulties working with the management of the home. I would compare this to other agencies who have provided care for her in the past. Because of her rigidity and routines and possible OCD, my mother is challenging to provide care for, and some care managers have been better at working with her and us than others. So far, Luxury House tends to fall into the difficult category. The problem is that there is no other choice of a care home where she can have her own flat and buy a graded level of care (of which she is at the maximum presently). What concerns me most about Luxury House is what seems to be a culture of hubris. I've been given the impression that Luxury House is different and no-one else complains. Luxury House is different, in many positive ways, but it is far from perfect, and our experience of some of its approach brings to mind our less good experiences of homecare. We are told that problems have been dealt with when ( from my mother's and my perspective) they haven't been and that we are wasting time by raising them again as problems. But promises of action are not reliably carried out. Staff sometimes deny that we have raised issues that we recall raising. Staff sometimes do not seem to listen carefully enough to what they are being told, sometimes may talk over the person who's talking, will dismiss their concerns without fully hearing them. Some seem to have a tendency to blame residents and families rather than to admit to any mistake a kind of "I'm right, you're wrong" position. I don't see any sign of this problem causing serious deficiencies in care, but I do wonder how it affects residents with dementia, for instance.
As I said, it seemed right to put all that to an inspector at the time of their inspection, but not to pass it on further, for risk of damaging a relationship with Luxury House that is work in progress. With time things may improve; I hope they will. Why on earth am I posting this online then? I need an outlet, I'm not naming the home, and I don't think many people are reading this. If CQC think I have raised safeguarding issues they will pass them on anyway. I hope those of you who do read it might give me some perspective.
Why is she staying?
Given all this, I feel some explanation is needed for why we think Mum is better staying at Luxury House, instead of a) moving back home, or b) moving to another care home.
Well, the short reasons are given above. The long explanations will have to wait for another time.
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