"Patients needs not being met and very poor experience"

Last November mum had a funny turn, going to our GP for an assessment regarding her mental health. She was then referred to Stapleford Care Centre with a mental health doctor, with the Iris team being bought in for assessments on mum late last year. There was a brain scan set for the new year. The Iris team I felt created havoc with everyone, myself and my future daughter in law did most of the care for mum, the Iris team didn't complete communication book we set up, left tablets out that we had set up in blister packs etc They were forever on the phone to me contradicting each other in what I was being told. For example, I was told not to buy mum any biscuits (this is virtually all she was eating at the time, even though I provided meals, fruit etc) as not good for her. So mum then didn't eat. Then I would get another one call me, saying they'd been out and bought biscuits to encourage mum to eat.

These were the 'higher end' people within the team not the actual day to day carers. There were so many issues you wouldn't believe. They said mum didn't assess badly. I don’t know why. One of the assessors wouldn’t even let us take notes. Why not? I begged to differ as mum was not in a good way, she wasn't looking after herself in anyway whatsoever and didn’t know basic things. I got a call saying they were putting a 3 wheeled walker in for mum (she had a ‘zimmer’ she didn't use) I asked them not to put it in whilst I wasn't there but to leave until I was with her to show her how to use. To help make sure she would not fall (I work full time) but they put it in anyway, with notes stuck on pictures frames saying "Use Frame". I was surprised they did this for a dementia patient.

We were on the way back from City Hospital with my father in law (who has since died) to get a call from my daughter to say the carer had contacted her (we only live across the road from my mum) and she couldn't get in. Mum had left the key in the door and she was lying on the floor in the kitchen, shouting ‘help me’. My daughter and the carer went to a neighbour to go over to mums back garden as we pulled up. My husband broke in to get to mum, who had fallen over the walker and broken her hip.

She was taken by ambulance to QMC for a plate and screw operation.

At around the same time there was a meeting set for the results of the brain scan with the mental health doctor at Stapleford Care Centre, I had a battle for this to go ahead without mum but they agreed. Five of us went to the meeting, to be told mum had moderate to severe vascular dementia, but as she was now in hospital, she would be taken off their assessment. Anyway, mum’s hip was operated on but her mind seemed worse, the nurses at QMC spoke with me, mum was walking a little but doing things like switching all the lights off in the ward. I appreciate physical wards are not set for dementia patients. They explained the best thing for the best outcome would be rehabilitation at Lings Bar hospital.

Mum went to Lings Bar Hospital. Well, I don't know where to start and rehabilitation is not the word I would use. Mum was left sat in a chair with a buzzer under her bottom that went off every time she moved. She went downhill quite badly. She had severe leg pain which they scanned as concerned for DVT but nothing on scan and so nothing done. They are supposed to elevate leg but every time we went (one of us daily) it wasn't. An assessment was done there without them saying anything to me as I found a brown envelope with details in it. Mum had been hiding tablets left with her, we said this to the staff many times. I continually got calls off the staff at Lings Bar saying they couldn't settle mum. This was often late in the evening and asked me if I would speak with her. I did but it didn't help as mum needs to have her hand held and see people. She also had a fall there but not given much info except a call to say fallen but OK.

One day I received a voicemail at 7. 30am whilst at work saying mum was aggressive and abusive and could I go and sit with her as they couldn't get their rounds done as having to spend time sitting with mum. I was appalled to hear this message and tried calling back but to no avail as I couldn't leave work as it was my busiest day. The day before when I went to visit, they were all talking at the nurses’ desk while mum was shouting for the toilet and she was ignored. So I took her myself.

Several meetings were called then cancelled; eventually there was a full team multidisciplinary meeting. At this meeting the physio, a ward manager, the occupational therapist (who I had not seen or spoken with), a social worker from Lings Bar who had been given mums case on the day.

I was in despair as six of us went up for this meeting and in my opinion no-one would listen to what we were saying, the outcome being mum couldn't come home with care as it would not be safe (I do agree on that point) but they said residential care only. I strongly disagreed with this as mum was on about her fourth water infection by this point. Her mental state seemed affected by this and she wasn't walking at all. They had not allowed her to even try to walk. She hid her tablets and wasn’t eating.

I felt I was not listened to and it broke my heart. I said I wanted mum in the right place and a forever home. I didn't want her moving again a month down the line. I was told that wouldn't happen. I was then left to tell mum myself what was happening. I felt it was as if the staff were then pushing to get her off the ward. We felt very pressured and we were told to go and look at residential care homes. We knew nothing and were just given a booklet!

The first home we went to was lovely but it was beyond our means (mum is not self-funding). I spoke with the social worker who said the home who refused her would not speak with him or the ward as to why they refused mum, so he had nothing to go on.

After several calls I was told to go and look at a home the social worker had called and, if seemed nice, they would get an assessment done. We went the next morning and they assessed her that day and mum moved in. The care home called to say mum had eaten and walked. All seemed OK but I was concerned as mum didn't settle at all, she didn't seem to fit in.

At the beginning of the following month mum seemed again to get worse. She was not sleeping, was very agitated and everyone was concerned. The care home said they would speak with her GP after the bank holiday. I received a call from the care home, they had the mental health doctor from Stapleford Care Centre to see mum, who had put her on a lot of medication and were sending her to hospital. I asked where and was put on to speak with the mental health doctor (this is not mums GP)who said she was going to King’s Mill in Mansfield. I asked why there and was told there were no beds at the City Hospital assessment unit. I said I didn't want her going that far away as we live in Chilwell and that City Hospital would be difficult enough without being in Mansfield especially as hospitals have restricted times. The mental health doctor said it might be better if you didn't see her. I could not believe it at all. I lived across the road from my mum and saw and cared for her virtually every day until her fall at home. Then between us someone went every day to the hospital and the care home and to be told that.

I said I wasn't having mum in there at all and the doctor said what are you going to do about it? I was so upset. We stopped our conversation and about an hour later I had a call from the care home that they had spoken with mums own GP and she was going to Bestwood Ward, in the St Francis Unit that evening. Mum went there quite late that night. Mum was assessed and taken off some medication. Obviously this is a secure unit and there are still assessments taking place between the mental health team and the mental incapacity team. Speaking with several members of staff I now know that what I felt wasn't right, really wasn't right.

Mum has been let down so badly. No wonder she is so bad as she had been moved 4 times in 10 weeks. We went to visit mum and were called in to see the consultant doctor of Bestwood Ward, along with another doctor, a nurse and someone else. They were trying to explain about getting legality behind mum for keeping her there and had altered her medication to try and calm her without over-sedation. However she now had an irregular heartbeat and there were concerns as to how to treat her with weighing up risk of heart problem against risk of stroke if warfarin was used. It is heart breaking.

Whilst at Bestwood there someone came who was a 'best interest assessor' to try and get a DOLS act behind mum to keep her there legally. I did agree with this. They asked me all about what has been going off. It appears mum should have gone to B47 of QMC after her operation as this is a specific dementia ward at QMC, and that Lings Bar do not have sufficient dementia specialists to deal well with dementia patients. She asked me about the meetings and who attended. I told the DOLS assessor that the social worker was and what I had heard from them. I said I hadn’t heard meeting was confirmed or not, I told her the name of the social worker that the mental health assessor thought it would be. The DOLS representative gave me lots of great advise and advised me to speak up and find out.

I still hadn’t heard anything at all so I called the number I had been given from the mental health assessor which is a unit for the NHS in Mansfield. I asked for the person who was not there so I left a message. I heard nothing so called back and someone answered who again I explained to that I needed to know about a social worker and if meeting was happening or not as I needed to book time off work. They gave me a mobile number for the person. I called it, for the mobile number to have been changed. I called the new number and left a message saying I needed information (as above). I received a call back from this person saying, meeting still not confirmed, it wasn’t the social worker who they thought it would be but they didn’t know who it was or even if there was one.

Again I was stressed and I was very concerned this was going just how the bad meeting was at Lings Bar and I needed time off work to book. This went on for a while until I said I wasn’t at all happy and really concerned for mum’s outcome yet again and I was getting frustrated. They were aware of what we had been through before. They gave me the number for Nottinghamshire County Council adult social services and told me to call them on Thursday. I called Thursday and was passed around and around, as no one knew anything.

I left a message for someone to call me back – the title of this post was the 'best interest assessor' who I knew wasn’t the correct person. They called me back and I apologised that it had ended up at their door as I knew it wasn’t their responsibility. They checked all the notes etc and said the referral had gone to Broxtowe but no social worker as yet assigned and they believed that they weren’t given cases until a Tuesday and this is when mums meeting was supposed to be. They said they could not however guarantee anything would be done but the said they hoped for my sake that it would. But safeguarding patients take priority (I do understand this). Hence the meeting did not take place that week.

Bestwood and assessors have all said mum will not be going back to the care home she was in as it wouldn’t be suitable, however payment would still be made to them until the change of home was made, so mum will still be paying her big chunk too. Nottinghamshire Council told me the contract was between them and the care home and therefore I couldn't cancel it and they couldn't until someone higher told them to. All this when where she is I cannot get often enough in their visiting times and have to pay laundry service for her clothes at £10 a time (every 2 days) whilst it seems to me the care home is sitting pretty. I can only get 2 sometimes 3 times a week without booking time off work.

I feel so guilty that mum has gone through this. She hasn’t had the chance to settle anywhere whatsoever and there will be another move soon. I really could cry for how much mum has had to go through. I would do anything for my mum, I don’t have much money, I haven’t got a loud voice and I am now in despair for my mum. It just seems (in our case anyway) that mental health is not important. My father in law who recently passed away had a physical health problem and has had the best of care in comparison. It really is so unfair.

Bestwood ward is fantastic, the staff know their patients and they communicate, but I understand this ward, along with Daybrook, is closing in about 4 weeks. The aim is to set up more care in the community by IRIS teams. I hope no one ever has such a bad experience as mum has been put through with the Iris Team and all that followed.

On a plus note, this evening I have received a call from a social worker for mum, lots of advise and support, the care home will be cancelled and have meeting set.

So hoping mum can now have the proper care she deserves and a forever home.