I am pretty sure many of you will be surprised and maybe even shocked to learn that Marie's residential placement did not work out and that in August 2018 the Senior Manager of Marie’s bungalow gave our Council 28 days notice to leave their premises. Unfortunately I was not privy to this information and only found out two weeks later at a Best Interest meeting I attended with two of Marie's ex carers, Ann and Sandra. Both had remained friends and sometimes helped out when Marie came home for a visit. I had shingles that day and didn’t feel too good so when I heard the news that Marie had to leave in 14 days I was shocked and asked the Social Worker why she had not informed me of Marie's proposed eviction. She apologised and said she’d meant to tell me and then forgotten.
When I had first requested residential care the Council had ignored our choice of home and put Marie up for tender with their own choice of care homes.
I was horrified, and when nobody bid for Marie’s care package after seven days she was put up for another seven and finally, and no doubt under pressure from Marie’s story being on social media, she got to go to the home of our choice – our choice only because it was a home Marie had been introduced to 8 years earlier by the council and one she was familiar with. Of course our real choice would really have been to remain at home with the right support in place but that had been denied and so due to my ailing health there was no other option. Just like Marie's respite day the home would only take Marie on a 1-1 24/7 basis so she could have maximum support.
Marie developed a serious case of odema not long after she moved in. The GP said it was through lack of mobility because every few weekends when she came home the swelling went down. Nevertheless she had to wear slippers for five months which must have lowered her spirits because she loved her specially made patent leather ankle boots and I felt so sorry for her. Weekends at home was also an opportunity to catch up on her sleep. After ten months when it was obvious Marie wasn’t settling the owners suggested she try a different bungalow more suited to her needs.
I flew to Rome on a cheap four day holiday on the day Marie moved into her bungalow. She was familiar with the premises because she went there a few days a week for activities. It was a new beginning for both of us and I was looking forward to the future. Nothing had really gone to plan since she had left home and I hadn’t expected to be so involved in her care. It goes without saying that I love her to bits and supported in any way I could but I was hoping we could ease off the one in three weekends and she would settle into her new home. One day I would be dead and there would be no home to come to. I needed to see her settled.
This is probably the stage where many parent's would be frozen out of their son or daughter’s life, accused of interfering and being too over protective, all these derogatory terms thrown at us to make us feel bad when in reality it’s the staff who have the problem because they don’t have or don’t want to give answers to the questions we ask. They no longer feel they are accountable to parents and that is wrong on so many levels.
In my case I was still sharing the care even though I would have liked nothing more than to leave them to it but they couldn’t have it both ways, encouraging me to remain involved and then shut me out when it suited them. I was still Marie’s voice and I wanted accountability for the injuries she had received if only to see if they could be avoided in the future. Accidents happen. Sometimes Marie’s got a bruise when she’s been in my care and I can’t account for it. I didn’t see it happen, all I know is that she didn’t have it when she arrived home but I will point it out to the staff when she returns and tell them it happened in my care.
Nearly two weeks after Best Interest meeting the social worker rang me. She said she'd been asked to see if there was any way I could reduce the 24/7 care package? If I couldn't the alternative would be Marie going into Independent Living under the Court of Protection. My heart skipped a beat. I asked her how she could even suggest putting Marie through another move when her history was now telling us it was doomed to fail. Marie had had enough and needed to come home. Then it occurred to me that if they can apply 24/7 funding for Independent Living why couldn't they provide the same funding for someone who chooses to live at home. Wasn't it all about choice these days? Well, wasn't it? So I asked her but she said it was a completely different care packages and full time care isn’t supplied for someone living at home with family. I panicked and told her she would have to give me time to process the news and I'd get back to her in a few days. (This is why I prefer emails; they allow me time to digest the information.)
I have suffered with arthritis for years and had a left knee replacement just over two years ago. I particularly suffer with my hands, have cortisone injections in my thumbs and wear splints as I can barely move my thumbs. At long last when I saw the surgeon on August 6th he booked me in for an operation on first one thumb and then the other 6 months down the line. My hand operation was set for October 26th and afterwards would be in a cast for six weeks. I am now in a high state of anxiety about the alternative suggestion to Marie coming home. With the 24/7 care package I could have gone ahead with op despite Marie being at home but now I had been asked to reduce the hours I decided to cancel my operation so I would be available to fill in any gaps of care. Regarding the hourly reduction, there was nothing for it but to ring Marie's ex Carers, now firm friends, Ann and Sandra. I explain what SW had told me and asked if they could make up the hours from 4pm - 10pm? I would cover the gap between 2-4. I told them it would only be temporary and we could sort it out properly when Marie came home. I felt like I was being emotionally blackmailed with Marie being dangled like a carrot - reduce the hours or she won't be home at all. I couldn't afford to take the risk and I was afraid for Marie's future.
The original notice for Marie to leave in first week of September had been extended until the end of that month. Of course we all know that the owners cannot put Marie out on the street but if her behaviour was that unmanageable they could have call the crisis team and had her taken into emergency care, which would likely are meant being sectioned, but they didn't. Nevertheless I had been told parents were complaining about Marie and residents were afraid of her and it broke my heart to think she was in a place where she was no longer welcome.
My emotions were driving me to accept anything just to get Marie home but more and more people were telling me I should insist on a full care package.
I was desperate for information and advice and so one day I contacted The Challenging Behaviour Foundation CBF and told the Family Support Lead our story. She immediately responded and asked permission to contact an expert for advice about the request to reducing the care package.
The last Friday in September the social worker rang me with a list of 4 agencies to choose from. There had been no financial assessment and again I needed time to process the information. I was worried that we would be unable to meet the exorbitant hourly rate some of them were charging. I emailed the social worker and asked her to send me the agencies details and hourly rates for consideration. Adult Services had taken their time and now they were more or less asking me to make major decisions overnight with no safety net for either mine or Marie’s future.
On October 3rd on the advice of the CBF and Luke Clements Professor of Law & Social Justice at University of Leeds, I informed the council that it wasn’t viable to use volunteers and I wanted an increase in the care package. I told them by reducing Marie’s hours from original 24/7 assessment that they were breaking the Care Act.
The next day the social worker rang one of the volunteers and tried to pressure her into doing the 4-10 shift. She told her Marie was only coming home because they (my two friend volunteers) said they would be part of the care package. My friend rang me in tears apologising for letting me down but she hadn’t let me down, there’d never been any indication at Best Interest meeting that volunteers would be part of the care package. It didn’t even make sense! I put in a complaint through the council’s ‘Have your Say’ and asked for a more experienced social worker, someone who’d been qualified for more than a year and someone with better communication skills and empathy..
The owners had given Adult Services almost 3 months to sort out a package but they had dragged their feet and poor Marie was in Limbo so at this stage a firm date was necessary.
I won’t discuss what went on at the meeting because although all and sundry are invited it is classed as confidential. I did come away with an agreed plan to employ PAs to care for Marie at home. It was also agreed that I would get volunteers for the week of 19th to enable Marie to come home on eviction date whilst the care package was being set up. Getting volunteers for a week was no problem and could run into two weeks if need be. That was more than enough time for them to sort out the funding.
The following morning I had my first appointment with solicitor. I found this particular solicitor's details on a list The Challenging Behaviour Foundation gave me. This solicitor had been monitoring developments over the weeks in case they needed to step in to represent Marie or myself. I told her how concerned I was about the choking incident and explained how I had agreed to get volunteers to cover from eviction date on 19th in case care package took longer to set up. The only volunteer shift not covered was 8am-1pm but I wasn't panicking because I still had a week to organise this and the 3 other volunteers had agreed to extend their hours if necessary. The solicitor was concerned the responsibility for providing the care was left on my shoulders and asked if it was OK to write to our LA to see if they could provide agency cover from 8-1.
6 days to go
I met with volunteers at my house
5 days to go
Meeting with social worker, lady from Direct Payments to go over agency/PA funding, and two of the volunteers. Social worker told me that although they had no intention of stopping me from bringing Marie home the following Monday they would not provide the 8-1 agency cover because they felt Marie was in a place of safety and wanted to persuade the owners to extend the eviction date. If the home refused to keep her any longer then social worker would send her to respite. What respite? I asked her but she didn't know. The only respite poor Marie would be offered would be under a section because we both knew nobody else would take her. After all Marie had been through I thought it was very sad that she even considered such a thing. But then they wanted Marie to live independently anyway so what did they care?
I told her Marie was desperate to come home and now she she confirmed they would not provide 8-1 cover I would sort it.
4 days to go
Spent early morning ringing around agencies and finally found one that could cover the 20 hour a day support. I emailed social worker with the good news. She responded by saying that she was not happy with only three volunteers and that there was no contingency plan. Oh my God, I thought, what more can I do? She also told me they were considering putting Marie under the Court of Protection to prevent me from moving her until a care package was in place.
3 days to go
The Court of ProtectionAt my wits end I sent social worker an email and linked her team leader.
'Can you please confirm if you have actually applied to Court of Protection for Marie to remain at the Home?'
I was devastated and so worn out. Why on earth the social worker took those drastic steps I will never know. There was just no need for it!
That night I went to bed at 8.30. It had been such a long day and ended so miserably that I was glad to shut out the world. At 9.30 my phone rang. It was a member of staff from the Home to tell me Marie had fallen and banged her head on the wall. They had called the paramedics out to her again. Paramedics twice in six days and to think that in 3 days time Marie's COP enforcement took effect for her to remain at the home. There was no more sleep for me that night..
Yet the social worker was adamant that respite would be found if the Home couldn't keep Marie after the 19th, knowing there was no such thing.. That was one of the reasons Marie left home in the first place and why she ended up going out of county. Her challenging behaviour left no doors open to her and that is why most people with challenging behaviour often end up living out of their own county and miles away from home.
I phoned the home early the next morning to see if Marie was OK. I told the member of staff I would be there in a couple of hours to take Marie for some lunch.
I had been called in to see solicitor at 10am on Monday and so that Saturday after a hectic week I planned to prepare for visit by organising my paperwork and photocopying relevant stuff but now that I was visiting Marie I would have to cram all my preparation into Sunday instead. The drive is about 36 miles and takes about 40 minutes.
With Saturday and Sunday spent taking care of Marie I was unable to prepare for my solicitor so I got up at 2am on Monday morning with very painful hands and printed off and organised papers and before I knew it I had to leave for my early morning appointment in the city centre. It was November 19th final eviction day and COP day. And I probably needed to retain a barrister!
I was tired and didn't feel too good as I took the lift to her office. She was very good fitting me in at such short notice and I valued her expertise and guidance. Who'd have thought that at the age of 65 - and Marie 53, we would be fighting for Marie to come home? If I'd have accepted Independent Living we'd have had none of this nonsense, but Independent Living was what the Social Worker wanted and not what Marie wanted. Marie wanted to come home and I was determined for that to happen. It was my last fight; I just hoped it didn't kill me.
I was shocked and disgusted when solicitor went over information she had received from the council about why they had applied to COP. There was an omission of relevant facts and an insertion of inaccuracies. I will not disclose any of the content except to say I was made me out to be a really awkward person who 'refused' to do this and 'refused' to do that. Someone who was going to bring Marie home on the 19th whether I had the Care or not! Why would I be fighting for a Care package and bring Marie home without adequate care and support? I had the volunteers for that week and the following one if necessary. I also had agency willing to take on the whole package. I'd done all the donkey work for them. The only problem was a bureaucratic one. The person who wrote that statement committed perjury.
When we arrived at the Home they had not bothered to pack the last of Marie's belongings. The manager told us that social worker had not informed them that Marie could leave. I was beyond being messed about, having people playing ping pong with my emotions, so whilst I had a further discussion with the Manager, showing her the social worker's emails confirming Marie could come home, Ann went into Marie's bedroom and began to pack the last of her things.
Despite having a three week supply the manager would only give me 3 days medication, which was not at all helpful, but not untypical of her attitude. It just meant Marie would have to be registered with and see our GP within the next couple of days.
I have to tell you I will always be grateful to The Challenging Behaviour Foundation for their advice and support and to our solicitor, too, for her kindness and expertise. Also Abbey Care Agency who stepped in to provide the twenty hour a day cover for Marie at such short notice.