Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs.
Some of our mums are advocates or established campaigners, one is a midwife, then we have two nurses, three teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.

We've had to adapt to so many government cuts and policies in the last few years and it's taken its toll on families. This blog has given parents the opportunity to share their individual experience of their unplanned life with a vulnerable adult/child.

Some parents have had great support with wonderful professional guidance, whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of their disability. Facts about their family life have been distorted and manipulated into many untruths, making parents aware their reputation precedes them in every meeting they attend. They feel judged, disrespected and ganged up on. Telling their story in Warrior Mums puts their truth 'out there' for all to see.

A major concern is that when a young person reaches the age of 18, regardless of whether they have autism or a severe learning disability, legally, they are classed as an adult. As a parent you can no longer make decisions on their behalf. If your loved one is in the care of the state and you upset the care staff or social workers then the chances are they will stop you from visiting or from having any contact. Information regarding medication or any other health issues about your loved one's welfare is withheld, all under the guise of your loved one's 'best interest', pulling out the Court of Protection/Mental Capacity Act gagging cards. The cruel message to parents is clear - - toe the line, stop asking questions and taking too much interest or lose contact with your child.

It's hard to believe this government are locking up people with special needs, people who would have had more freedom in the 70s living in big 'institutions' than they do in 'independent living' today...

We have to do something to stop this abuse of power. We have to do something today...

Michelle Daly

11 April 2020

There's No Place Like Home..

It is quite a long time since I wrote on the Warrior Mums, mainly because my medication makes my brain a bit foggy but today I felt compelled to make an effort. I wanted to share good things about our lives as most of us are in lock-down and could do with a bit of cheering up.
So many loved ones are dying, ravaged by the Corona virus, often with no time to say goodbye as families hear over the phone that their relative has just become another statistic. I couldn't begin to imagine the grief and shock at these sudden deaths. Thank God for our marvelous NHS and social care staff who are working tirelessly, putting their own lives in danger to save others. Supermarket staff, refuse collectors, postal workers, food supply chains and the lorry drivers, pharmacists and GP receptionists and many others, are all heroes in my eyes and I suspect in yours too. Some days I sit in the garden listening to the sound of silence. No planes from the nearby airport or the usual chirpy sound of neighbours ­or children playing. Everybody is respecting the lock-down and doing their bit to save lives. Then the local church bells ring out at 12 for the Angelus and I am filled with gratitude for the life we have and the stress free environment in which we live. Our garden would be a luxury to millions of families cramped into small houses or high rise flats. They must feel like they’re living in a prison as the hot sun teases them through their windows and they are confined to four walls.

I thank God Marie returned home 18 months ago after almost 2 years in residential care even though she was a shell of herself and took a good while to recover as the photos show.




I am also mindful of parents who today have sons or daughters in NHS units where visiting was restricted at the best of times. Now they are completely isolated and must be out of their minds with worry. I suspect there will be many changes for the better when this pandemic is over and one of the priorities has to be to close these NHS units down so that these vulnerable people will never be isolated in large numbers again. 
To the Government I say, don’t just talk about it – bloody get on and do it!!

I realise as I write this that it’s 50 years today since I met Marie. Most of my friends and followers will know through my books and blog posts that I’ve spent many or even most of those years battling with bureaucracy for Marie’s rights and for decent care. I didn’t put a tooth in naming and shaming those (and not all) who were deliberately unhelpful and often abused their power to make our lives a misery. My mantra has always been ‘No voice – no choice’ So from 1970 when I first met Marie I have been her voice.
I made many enemies and was often told my reputation preceded me. I just had to live with that. Like most parents of people with special needs, I did what I had to do.
Today I am happy to tell you that the wars are over and we are in a good place with the care package that I fought so so hard to get even though I am still responsible for a small part of the care each day. Ideally Marie needs 2-1 support especially when she goes out in the car, so you could say I am the back-up staff permanently on call despite my poor health.

So how are you all coping with lock-down? I have been told not to go out for 3 months but I am a bit of a home bird anyway so it doesn't affect me that much. I do miss nipping out when I choose though, even if it's only once a week. Marie's PAs do our shopping and anything else I would normally have to leave the house for. 
Isolation, or being housebound, is a way of life to many parents of special needs and this lock-down might give the public a window into their often lonely disconnected lives. Maybe we'll all come out of this pandemic, kinder, more thoughtful people.

One of my worries was how quickly the supermarket shelves emptied and if we would ever run out of Marie's staple diet of eggs. Marie has dysphagia and some days she copes better than others. There  are times she'll only have a liquid diet like soup and rice pudding because she's choking and struggling to eat and other days she's able to enjoy most foods except for meat which is permanently excluded from her diet because she is unable to chew properly. Eggs, however are something Marie  will never refuse.
A very kind friend brought Marie a tray of 30 eggs and I wondered if there was any way of preserving them so I searched good old You Tube and found an American farmer who freezes her eggs for the winter. 

I suspect most of you are rolling your eyes because you've been freezing eggs for years but I had no idea this could be done.

Three eggs gently mixed in a jug and poured into a sandwich bag to lay flat in the freezer so they take up very little space when frozen and can be stored like post cards. You can use as many eggs as you want but I chose 3 for Marie's omelette. I am also freezing mashed potatoes too although I get someone to mash them for me because I wear splints most of the time due to arthritis in my hands and wrists.. I would love to do so much more but I can't.


My last post was about my stuggle to bring Marie back home and the snidey social worker putting Marie under the Court of Protection, but only for a weekend, to try to prevent me from bringing her out of the Home where she was so desperately unhappy and had been put up for eviction. I am happy to tell you that Marie has settled at home and is loved by all her carers. I employ them myself through Direct Payments from LCC and shared NHS funding. They all sing from the same hymn sheet and work well as a team.

One thing that’s for sure, that’s always been a problem and will remain so is Marie’s screeching. Stuck in the terrible two’s and being non verbal has closed many doors over the years limiting the opportunity of mixing with her peers. At home we have strategies in place to avoid these situations. 
There’s no build up to Marie's outbursts, just a piercing screech that goes from 1-100 in  a second and can continue for hours until she is so stressed it can be difficult to bring her out of it. Night time is the worst, especially with new staff. Marie uses her screeching as a weapon and has the staff over a barrel. Leaving her to screech at 3am because she refuses to get back into bed can be very unnerving, especially with neighbours on the adjoining wall which I unsuccessfully tried to soundproof. Every few months we'll try Marie in a different bedroom and all I seemed to be doing was moving furniture around the house.
Last year I had an idea that might solve the problem, to turn the lounge, which has double doors onto the wheelchair ramp and garden, into a self-contained unit. However, I quickly put the idea out of my head. The lounge was full of my Bronte books and other treasure that most people would see as junk. I must be a very sentimental person because I keep everything, although every now and again I might fill a few bags for charity, usually what I have bought but never what someone else has bought for me. 
And what about my other books, the ones I've had for years that I re-read every so often. Those original self help books that came out before the market was saturated with them. Feel The Fear and Do It Anyway that I first bought in the mid 80s and Norman Vincent Peals old book The Power of Positive Thinking that remained under my pillow for years as I dipped into it every night. 
So last year I was sitting in the lounge realizing it would be the ideal solution for Marie and staff to have this room but still reluctant to give it up. What would I do with all of my stuff? Cupboards and shelves I’d bought from charity shops and painstakingly stripped and painted over the years would have to be given (or more likely thrown) away.
Christmas came and went and I kept putting the idea out of my head until an incident that I felt left me no choice but to use this last resort; to bring some peace to this house. This screaming and screeching at 3am didn't happen an awful lot but it happening once was too many times..
And so the mammoth task began.
Shelves and cupboards were emptied of books and ornaments as I half-heartedly turned my little bedroom into my new lounge. When you have carers in the house all the time you have no privacy, so having a room to call my own was a benefit. It meant I could sit in peace and quiet when I didn't feel well and the carers, who are like family, were thrilled about this.
Miraculously my cupboards fitted on one wall enabling me to put everything back in its place and I began to see the silver lining as my 12x14 bedroom transformed into a lounge and Marie moved into her new sunny unit that opens onto the garden. 

My old bedroom

Marie has always suffered from claustrophobia due to the nuns locking her in a room on her own where she was placed in the middle of the floor (because she couldn’t walk due to cerebral palsy) and only brought out at mealtimes.

Hindsight is a wonderful thing, Isn’t it? I should have taken these steps long ago, but what seems extreme yesterday is plain common sense today. I must stress though, that I have no other children at home and nobody but Marie to consider. Had there been other family members, Marie having the lounge would not have been an option.

Would it surprise you to know that Marie was 55 in February? Every year it gets harder and harder wondering what to buy. Very little impresses her. She loves to unwrap sweet and crisp and maybe a new catalogue. I haven’t had a dog since I lived in Ireland but deep down I have always wanted one. Now that Marie had her own little living space with access for a dog to go straight onto the garden why not buy her one for her birthday? No sooner had I mentioned it to Clare, one of Marie’s PAs, when she brought me a large crate her dogs no longer needed and Sandy and Sarah volunteered to go and pick the puppy at the farm. Of course I’d considered a rescue dog but most of them were too big and we had to consider Marie’s safety and the smaller breeds seemed to be snapped up as soon as they arrived.

So on the day Sandy and Sarah drove off to buy our pup I waited in anticipation unable to share the excitement with Marie as she would not have understood.
Before long Sandy rang me from the farm telling me there were lots of pups scrambling for attention but there was one little pup that stood on it’s own away from all the others and she was trying to coax it to come over to her. The phone call ended and I continued to wait. Then it pinged again. Sandy had managed to scoop the 14 week old pup up and Sarah sent me a photo that would melt anybody’s heart. 

How sad did she look? No wonder she stood alone. She could barely see through that unkempt fur.
And so Maisie, as we called her, was the chosen one. 

Maisie arrived home looking a bit more cared for having been tidied up by the owners before she left.

From the day Maisie came into our home she’s been a little dream and brought nothing but joy. She's house trained now and due to lock-down we have been unable to take her to have fur cut so it was done at home. Now she skips around the garden looking like a spring lamb. 

Maisie is so loved and I think she loves us too. There are times when Marie can hardly get her breath for laughing at Maisie’s antics and other times when Marie is so switched off that she hardly notices the pup. Maisie’s crate, where she sleeps every night, has remained under the table in Marie’s room and is a soothing presence in the dark. I don’t think I could move her if I wanted to.

One thing I know for sure is that it's easier to remember the professionals that were good to us rather than those that tried to do us harm. I think of people like Dr Sheila Kidd, Consultant Psychiatrist at Peterborough General Hospital and later of Gloucester Centre, which was a special needs residential facility.. We were referred to Dr Kidd when at the age of 8 Marie started having epileptic fits. Dr Kidd was a refreshing change to the stuffy 'specialists' I was used to meeting. Dr Kidd wrote the foreword for my book With a Little Help from my Friends and I am happy to say we are still in touch today.

Also  Helen Laverty MBE who has injected tons of motivation into the world of learning disability nursing. Helen was a nurse when Marie went to Harmston Hall Hospital in Lincoln for respite care in the 80s. We caught up again on Facebook a decade or so ago and have followed each other ever since.

Nurse Helen Laverty

Helen says:
'I have been a registered nurse in learning disabilities for 40 years, and it remains a passion! My career has taken me from training in a long stay facility right up to today to the giddy tidal wave of inclusion! Nursing people who have a learning disability is a real POSITIVE CHOICE and one if given the chance of being 18 again I would choose again! I have experience in care situations across the age spectrum, and in both health and social care. I made the shift to nurse education in 1987 as I wanted to take the inclusion message to a wider audience. I am very fortunate in that my career has given me opportunity to have my life and career touched by such a rich and diverse group of people.'

Helen receiving her much deserved MBE

So I hope all you warrior mums are keeping ok. I bet between us we have loads of people to thank.
Michelle xx

27 January 2019

Whose Life is it Anyway - My Fight to Bring My Daughter Home - PART 4 OF 4

There should be no financial distinction between providing care for someone who wants to remain at home or someone who chooses to live independently. People can't be forced into independent living because they require a 24/7 care package when it is clear they want to remain at home. 

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 for Marie 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 when I was accompanied by 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.

The Home cited Marie's 'unmanageable' behaviour, screaming and screeching, saying that parents were complaining about her and clients were afraid of her, as the reason for the eviction. I thought that was very sad. They knew what they were taking on when Marie first went to live with them. I was angry too because whenever I phoned to see how Marie was, I was always told she was fine despite the obvious signs that 'fine' was far from the case, However, after 19 months in residential care it was pretty obvious Marie’s needs were not being met and that she was very unhappy. After the spate of incidents and accidents and the palaver trying to obtain accident reports I contacted Marie’s social worker for advice. She told me she had been advised to tell me that I was to contact the Safeguarding Team.

Marie went into residential care in January 2017 to an out of area home where she had spent respite periods. She was 52 years of age with a severe learning disability, epilepsy, cerebral palsy, scoliosis and dysphagia and on the autistic spectrum. She had a lot to deal with. She hates to be alone and when away from home does not settle very well at night.
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 stay 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.
        There were problems from the beginning. Although I met regularly with senior management, the decisions made about Marie's care when in the office were not implemented in the bungalow. I visited and took her out for the first few months but then it was pretty obvious to all that she still needed home visits . I did make the decision to stop accompanying Marie to the GP and other local medical appointments in order for the staff to handle the situation on their own and for Marie to get used to these visits. 

        It was Marie’s home visits and I noticed one side of her hair looked thin and scrawny where she must have been pulling it out. This was something she did in her childhood and it concerned me. After we get home and Marie went to the bathroom I was shocked at the bruising on her lower back. She was black blue and yellow with old and new bruising.
The day before she was due to return I asked for a meeting with management. I had never seen Marie look so wretched and I wanted to know why she came home to me with injuries none of the staff had noticed.
Senior management were very shocked when I showed them photos of Marie's bruising. I told them how sad I felt that these injuries had happened in their care over a period of time and nobody had noticed.

        I also asked if they used body maps and accident reports and told them how they needed to account for Marie’s injuries. If bruising goes unnoticed and then Marie comes home to me who is to say that she wasn’t injured at home?
They said Marie reached to pull her hair out when she is agitated so I suggested they ask all the staff when they see Marie reaching for her hair to very quickly but gently take hold of her hand and rest it on her lap. If everybody responded in this way it would help Marie break the habit.
I could see Marie's behaviour unravelling. She had so much to deal. A month after she moved into the new bungalow one of her night medications was abruptly stopped. Although it is entirely up to the home to ask for an increase or reduction in medication, I was concerned there was no tapering – just an abrupt stop. I asked the senior manager to allow Marie more time to settle in and for the staff to get to know her before any meds were changed but she reminded me that although I’d looked after Marie for a long time that she was in their care now. Sometimes staff see medication reduction as a feather in their caps but if they're too hasty and don’t consult all involved in that client’s care they are just naive and foolish and asking for trouble. 

            Not long after Marie’s injuries she had a medication review with the psychiatrist and I was absolutely stunned to learn afterwards that two senior staff went to the appointment without her. Marie didn’t refuse to go, they decided not to take her because she was unsettled. It was only 10 minutes from where she lived. Instead of Marie being the focus of attention the senior staff used the appointment as a kind of tutorial with senior manager showing the manager how to present clinical evidence. It’s a bit of slippery slope there isn’t it? People have a right to attend their medical appointments but it seems those without a voice to speak up for themselves have no rights.. I wonder what would have happened if Marie lived at home at the time and I didn't bother to take her to her appointment with a psychiatrist because it was easier to go without her. It wouldn't even occur to me - and the consequences aren't worth thinking about.

In mid July I collected Marie for her weekend at home and member of staff told me Marie had a bruise on the top of her arm. She said it had been whilst staff member was getting Marie ready for a shower and had pulled her trousers down from behind. She thought Marie had lost her balance and fallen onto a chest of drawers. (Who undresses someone from behind, especially someone with cerebral palsy who is unable to stand without support?) The chest of drawers was on the opposite wall to Marie’s bed and the explanation didn’t really make any sense because of Marie’s cerebral palsy and unsteadiness I thought they would have the sense to undress her when she was sitting down on her bed so she has a safe place to fall. 
I was sick when I saw the bruise just below Marie's armpit and over the weeks I was given different versions of how she was injured; fell over a chest of drawers, fell onto a sink whilst the support worker was pulling Marie's trousers down from behind. I was very upset at the lack of concern. I was told she had cried when she fell onto the floor, and that almost made me cry too because it takes a lot for Marie to really cry. 

I only wanted to see the accident report so I could find out what really happened but I was told I couldn't have one due to data protection and apparently that advice was from Marie's social worker. (Strange that the social worker did not contact me to ask why I needed the report. She later told me she didn’t say I could not have a copy, she had told staff it was their decision, so in other words she told them they had a choice whether to give me a copy or not!)

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. Marie was crying out to be understood, for boundaries to be in place, boundaries that could meet her needs and keep her contained and secure.

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.

On the advice of the CQC which I passed onto the Home, I received an accident report by recorded delivery. the CQC
asked me for daughter’s details so they could check she was OK but I gave them no details of myself or daughter and told them I was confident I could sort things out with the Home. (I've always been a dangerous optimist!) I assured them I’d get back to them if I had to. 


And now after learning of Marie’s pending eviction at the meeting there really was no alternative but for her to come home. Even the staff said she would not cope with another move and needed to live with me. It was a big step for me to take but by this time I felt Marie needed to leave as soon as possible.  
I ask myself what I could have done differently to make Marie's placement work because sometimes when clients are asked to leave a place it's often due to family dynamics rather than not coping with the person in question. Having said that there was no sign of Marie settling into the residential environment. .

I began arranging the house not only to accommodate Marie but also her Carers. I had changed a lot of things around after Marie left home never dreaming she would ever come back to live here. The large dining table was dismantled and put in the shed and I bought a fair size desk that took up a lot of space in the lounge. So now the table and chairs were brought back into the house and my new desk went into the shed. Marie's bedroom was transformed into a dining/activity room. In order to accommodate the Wake & watch Marie was going to have the double bedroom so I gave my iron bed away and bought her a double divan. She had new bedding and curtains. Perfect! I couldn't wait to have her back!

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 two volunteer friends were now included in the care package but it didn't feel right, especially when the social worker came to see me and offered them Carers assessments. She also told me there were holiday forms if they wanted to apply for any leave. I'm thinking, Hey hang on a minute, you're treating them as if they're paid staff employed by our LA and they are not going to be very happy at your demands on their good will - and they weren't. 
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.
What happens if one of the volunteers was sick? Who does the care then? I couldn't!               

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..

It wasn't long before social worker’s senior manager rang me about my complaint. It's very insulting to listen to someone who was not at the meeting insist that my two friends said that they would volunteer to be part of the care package. I later obtained the minutes which made no reference to any such commitment from my friends but now social workers were closing ranks with some cock and bull story. My friends came to the meeting to support me. 
I asked this Senior Manager about the status of the care package and why the delay. 'Oh that's gone!’ she said. ‘We'll have to have another best interest meeting to decide Marie's future because if the care can't be provided at home we'll have to look at other options'. My heart sank. I asked her what options and she said that had to be decided at the next best interest meeting. I told her that if she was referring to independent living that it was not going to happen, that Marie would never cope with another move, but this woman was adamant and we argued back and to. It was 4.30 on a Friday afternoon and I am left to cope with the news that Marie's package had been shelved and nobody had bothered to tell me. And now they were starting all over again. These people know I am waiting for Marie to come home and that I've been preparing the house for weeks but they couldn't care less.

November 5th we attended another meeting where the eviction date was set for a week later, November 19th
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.
We brought Marie home after the meeting where she stayed for four days. We took her to have her photo taken for her blue badge renewal. She looked so worn out. 

It was a Sunday afternoon with just over a week to go before Marie came home when I had a call from the home to alert me that Marie was recovering from a serious choking incident after being given gammon for her Sunday lunch. (Gammon for someone with dysphagia!) She was choking for so long that the paramedics were instructing staff over the phone as they rushed to the scene. She choked for over 2 1/2 minutes when paramedics advised staff to lay Marie on the floor, which they did, and she coughed the piece of meat up. God love her she must have had such a shock and I wondered how much more she could take. I spoke with the paramedics who were checking Marie over and they told me they wanted to take Marie into hospital, suspecting she may have suffered further brain damage through lack of oxygen. By then Marie was sitting quietly drinking a cup of tea so I asked the paramedics only to take her if it was really necessary because she would get further distressed and the chances were medical staff would be unable to treat her. They said they would ring GP for advice and he (GP) called to the home soon after to check on Marie and although she would not let him examine her, as far as he could see Marie was fine. 
Thank God she would be home in a week. I was counting the days.
7 days to go
The following morning I had my first appointment with a solicitor at Broudie Jackson Canter. 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 was very upset and concerned about the serious choking incident and told her so. I then explained how I had agreed to get volunteers to cover Marie's care at home from the eviction date on 19th just 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. I agreed.

6 days to go
I met with volunteers at my house

5 days to go
Meeting with social worker and lady from Direct Payments so we can go over Agency/PA funding Also present were 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 that she had confirmed at the meeting that our LA would not provide 8-1 cover I would sort it out myself.

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 Protection

At 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?'
There was  no reply from either of them. I suppose that information was for them to know and for me to find out. However at teatime that Friday my solicitor phoned to tell me she'd received notice that Marie had been put under the COP a few hours earlier. It was about 4.30 so what could I do? I had made arrangements to bring Marie home the next morning for the night but the solicitor advised me to cancel in case Adult Services thought I might not take her back. I followed her advice and cancelled. I was asked to go in and see her first thing Monday morning so she could go through papers with me, take my instructions and discuss getting a barrister. 

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..

I am mindful that in the beginning the Home were coming from a good place. As the eviction date passed and one month turned into 3 they had every right to call the crisis team to find emergency accommodation but they knew Marie would likely end up being sectioned and they would not send her to the point of no return and that has to be acknowledged - and for that I will always be grateful...

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 meeting 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.

I spoke with the staff when I arrived and when I was about to leave with her the deputy manager told me Marie had bruising from the choking incident. I didn't think they would be too bad, nobody had notified me of any injuries and after all they were six days old.

We went to our usual haunt and I took Marie to the supermarket toilet before we sat down to eat. You must all be tired of hearing me say how shocked I was to see Marie's injuries but when I saw the bruising that day that she had sustained a week ago I gasped. Marie began to whimper as if she was glad that someone had acknowledged the pain she had endured. And nobody had told me. It was inexcusable...

Usually if something is wrong I manage to console her but this time nothing I did could snap her out of the mood. She was whimpering and by the time we got into the cafe there were tears rolling down her cheeks. I'd left her at the table like I usually do whilst I went to order. She was near enough for me to keep her engaged by telling her I was getting the fish & chips but she continued to cry. I left the queue and brought Marie back into the line with me but she still seemed fed up so in the end I abandoned the idea of a meal and we left the cafe.

I wheeled Marie into the supermarket wondering where else we could go and what else we could do. I tried unsuccessfully to cheer her up, dropping her favourite egg custards and crisp into the basket but she wasn't interested and was still crying.
Why was her life such a misery - our lives such a misery. She'd choked on the previous Sunday and had extreme bruising that nobody seemed concerned about and whilst in the midst of these injuries they'd gone ahead and given her the flu jab and two days later she'd fallen and banged her head on the wall. It was too much to cope with in one week. And now we had the COP to look forward to in order to stop me from removing Marie from the 'safety' of the home.

We must have looked a right pair. Marie was crying and my eyes were filling with tears at the thoughts of taking her back to the Home. I suddenly made a decision and took Marie outside to the car whilst I sat in the passenger seat with the door open and rang the home. 

First of all I told support worker how shocked and upset I was to see the base of Marie's back was black and blue, also her knee had a huge bruise on it. I told her I would have visited sooner had I been informed at the extent of her injuries, even though I had been busy organising Marie's home care all that week. I asked her what kind of mother would I be if I brought Marie back to her in such a distressed state? I told her I was taking Marie home overnight for a bit of TLC and would bring her back the next day. The senior staff member, who worked in Marie's previous home, was very nice and said she'd have medication for me to collect on our way home.

When I clicked off the phone I looked at Marie and asked her if she wanted to go home and the look on her face spoke a thousand words.. I couldn't resist snapping her with my iPad.

Of course I took Marie back the next afternoon. After a good night's sleep and batteries recharged I told myself things would soon be sorted. I had an agency on stand-by and volunteers to support Marie at home until package was set up. There was no reason on this earth for social worker to take those dramatic steps and put Marie under COP but to be honest after all I'd been through, I was looking forward to my day in court with them and sorting things out once and for all - and they knew it.

With Saturday and Sunday spent taking care of Marie I was unable to prepare for my solicitor's meeting the following morning so I got up at 2am and with very painful hands I 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. Solicitor 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.

After an hour and a half with solicitor we were bringing the meeting to a close. I switched on my phone and there were two emails from the social worker acknowledging the agency I had found and the other saying she was arranging the Care package for Marie to come home that day. I showed the solicitor the emails and the smile on her face reflected the relief and happiness I felt at that moment. Social worker wanted to know what time I would be back at the house with Marie so agency could meet us there to do an assessment. I was meeting my friend Ann in city centre so I told social worker I would be going with Ann to collect Marie at 2.30 and would be back by 4.30 to meet agency.

It was still teaming rain when I left solicitor's. First I rang the Home to say I'd been told by social worker that Marie could leave that day and that I would collect her at 2.30, then I ran to meet Ann to tell her the good news.

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.

Marie left that rainy afternoon without a goodbye from anybody. It had been a long day and was such a relief to get home. It was a lovely feeling taking Marie’s hand and walking her into our home – a home where where she is going to stay.

When Marie left home nearly two years ago it was because I was not well enough to look after her and not because she was unmanageable.
My constant request for more support was rejected and I managed for as long as I could with 18 hours a week and no respite. Now it seems we've done a full circle, with a lot of unnecessary trauma and heartache along the way only to end up with the care I originally asked for. Why do they make our lives so difficult as if every penny awarded to us comes out of their own bank account.

I am thrilled, thankful and oh so relieved that Marie is living back home where she belongs. Her hair is growing back and she does not choke as much because she is not so exhausted, sleeping at night and not during the day. We've had loads of advice and support from professionals, some new and others we were already familiar with..

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. 

There should be no financial distinction between providing care for someone who wants to remain at home or someone who chooses to live independently. People can't be forced into independent Living because they require a 24/7 care package when it is clear they want to remain at home.  

Every persons individual needs and wishes should be assessed without any prejudice or preconceived ideas and the powers that be need to be asking themselves every time they meet a person with special needs, whose life is it anyway....

@copyright No part of this blog can be printed without the author's permission