My Presentation to the Carers Cross Party Group last Night in Scottish Parliament on being Prepared to Care?

Good Evening, firstly I would like to thank Heather from Princess Royal Trust for Carers For asking me along to speak today. My name is Clare Lally and I am here tonight with my partner Derek and friend Michelle.  I am full time  mum/carer to my twin daughters Holly and Katie, the Twincesses. The girls are now 6 and a half and were born 12weeks premature, as a result of the birth Katie suffered brain damage and was left unable to walk, talk and swallow – she is fed via a button in her tummy and she is also a silent aspirator which means she can choke and you can’t hear it so we have to watch her 24hours a day to prevent this! She is such a clever girl she can also use this to manipulate a situation as well.. Holly our other daughter has no health issues, she is a beautiful girl with patients of a saint however I do feel I let her down a lot. So the theme of this weeks Carer’s Week is prepared to care? Was I prepared …to care? No i wasn’t, I was preparing to be a mum for the first time.
* – I wasn’t prepared for the continuous bad news we were getting for Katie, every day/week there was always something else wrong.
* – I wasn’t prepared to bring my children into the world and then spend every day thinking is this the last day we have with her.
* – I wasn’t prepared to have to learn all the various pieces of medical equipment we have to use on a daily basis.
* – I wasn’t prepared to feel I was letting down my other daughter because so much time focuses on Katie who isn’t well.
* – I wasn’t prepared for friends and close family to Abandon us at a time we needed them the most!
* – I wasn’t prepared for other Carers to be so horrible and nasty because I was campaigning and speaking out!
* – I wasn’t prepared to have to constantly fight and battle with services for services!

These are just some of the things I was not prepared for! But, Now these are the things I am not prepared to let other Carers Go through – we have to be prepared for things and we can do this by preparing together.  If we had been told before we came home from hospital with the girls all the things we would have to go through, all the fights and battles we would have to deal with I really don’t know if we could have done it!  There is no amount of preparation could prepare you for what lies ahead.  For me the 24hour care of Katie is the easiest part of life, the hardest part is all the fights and challenges!  I was on Call Kaye phone in the other morning on BBC Good Morning Scotland, and one of the things I said was we need a huge needle and thread to start sewing up all the loopholes and nets we all fall through! Well, we are that needle and thread, we can start sewing them up because we know what they are because we are the ones who have fell through them! We have to make changes not just for us but for the Carers who will be coming behind us so they do not have to go through the same hurdles and challenges that we have all had to.
And on that note I will thank you for listening and giving me the time to speak


2 thoughts on “My Presentation to the Carers Cross Party Group last Night in Scottish Parliament on being Prepared to Care?

  1. I was reading this wonderful speech and can associate some of it with my situation.

    I was not outspoken to begin with but it is hard to witness your daughter go downhill – it is like banging your head against the wall as whilst I have been open with the team – this openness has not been reciprocated. The carers themselves are only too happy to get funding for therapeutic care such as relaxation classes, massage, beauty treatments and outings. At some outings it is not encouraged to talk about the person you cared for but of course it is not in any carer’s group’s interest to talk against the system in any way like I am doing.

    There are about 5 diagnoses and a total of around 14 different mind altering drugs that have been given to my daughter. After 8 admissions into hospital acute wards locally she was transferred to the Bethlem in Beckenham and I did not know this was a research hospital. I have documented this all on my blog in any case but my daughter called it “prison” and they put her on the drug Clozapine against her wishes together with Metformine supposed to be given for diabetes but given for weight loss instead. A group of former patients got behind me when I documented the distress of my daughter in my blog – how they took her off so steeply and changed the drugs within 2 weeks. She pushed a couple of nurses out of the way to go out in the grounds and a Section 2 was given.

    I wish to talk about the legal process and this is really shocking.

    Whilst at the Bethlem I got to find out about a Tribunal and took time off work. The solicitor overheard my daughter saying she did not like the meetings and she was a bundle of nerves about this Tribunal and the Tribunal was called off “you do not have to go through with this if you do not want to” – the solicitor was recommended by the Hospital – Rethink were meant to come to meetings and did not turn up and the consultant psychiatrist played constantly on what Rethink were supposed to have said which led me to believe the advocates were very much with the hospital and even the solicitor who was recommended by the hospital seemed very pally with the team and they surrounded my daughter. The Tribunal failed to take place and then shortly after this there was call after call at work getting more and more threatening that if I did not consent to a Setion 3 then the team would displace me as Nearest Relative. They sent me court papers at work giving me 1 days notice the Hearing was going to take place to get rid of me as the Mother/nearest relative. I had no choice but to back down. Once on a SEction 3 under the Bethlem they messed with the drugs causing so much distress to my daughter she did not even know what drug they put her on and then when I got to find out as an emergency doctor was called out due to her experiencing heart problems the team called me aggressive and sent me letters copied in my 9 people or so. I have them as proof and more than one letter accusing me of threatening and bad behaviour – causing upset on the ward – you name it. I then got banned and I have again documented this. Then a group of patients I had never heard of before called Speak OUt Against Psychiatry who had suffered terrible treatment on the wards got behind me, staged a demonstration and within a day she was moved to Wales under Cambian’s care without giving a chance to say goodbye for the family.

    I was happy she was at Cambian at first – the facilities are much better and the food as well compared to the local wards. The environment of Wales was lovely too. However, I soon got to find out that the doctor was pro the Maudsley and I was excluded from day 1 – I appointed solicitors and it was only then I found out that the team were all trying to replace me again as Nearest Relative. They persuaded my daughter to replace a good firm of solicitors and that a Welsh firm would be best. They persuaded her to cool contact with me her mother and kept the phone charging in the office. When I complained they said that my daughter only wanted supervised phone calls at a time and day I could not ring. My younger daughter spoke to her sister and the sister said that it was not true she requested supervised phone calls. They gave the phone back to her and she was texting me regularly despite this ban. The hospital where she is has won best care provider 2012 and 2013 but I would urge anyone not to be taken in by this at all. This weekend we went down only to find the team all knew about the Tribunal which had been arranged for this coming Monday without giving my daughter the chance of a fair trial. The independent doctor came to see her and this is why we went down as we were afraid the team could manipulate her. Apparently the consultant psychiatrist had been to see her the day before and questioned “do you really want your mother to be nearest relative”. My daughter has confessed openly that she is afraid to disagree with the team. It is really strict there and you have to do as you are told, she has her reputation to worry about but at the same time she said “I will call the police on them Mum, you are still my Mum”. If anyone questions me as a mother then they have a right to but at the same time, they should be questioning what this so called best care provider hospital is doing. They even refused for my daughter to go down the road to get some chocolates for a friend – fellow patient. They played on Section 17 leave but I pointed out that originally 2 nights had been granted for the first time. I only needed 1 night as on this occasion it was a flying visit – two nurses pushed past me when they heard my daughter was in the car waiting for the independent doctor to arrive – they just marched up tot he car to take her back on the ward like a prisoner. Just then the independent doctor came and then we gave him a lift to the station and after his visit the team had all changed their mind about the Section 17 leave. All I wanted to do was to take her to get the chocolates for her friend and the team stood in the way at first and I am so disgusted that I have written directly to Mr Lamb. In the meantime I have the most shocking letters which I would not make public but I can see I am not alone and some people have had even more abuse. I think it is a good thing that I am documenting all of this and standing up to the legal teams, social services and the care team. If Mr Lamb and Mr Behan spoke of inclusion of families and changes I hope they look personally at my case and any others that have got in touch with me, should that be what they want of course. All I want as a mother if for a fairer system and the excuse they want to get rid of me is that they think that I will take her or encourage her to take off the drugs. I have researched the drugs and may well not be happy but because of my research I know only too well this is not possible but I wish Dr Walsh to look at the treatment of my daughter in line with the most shocking test results I have just had done privately. If left to this team at CAmbian they would do NOTHING except continue to push the drugs as they are doing blaming the Bethlem when in fact they are every bit responsible for ANYTHING that can happen to my daughter especially if they continue to give extra drugs on top like Lorazepam etc.

    Any mother should question and look up the drugs for themselves before praising their doctors/psychiatrists. I trusted these professionals to begin with. Now my daughter can barely walk without holding on to my arm, she feels dizzy, complains of a strain to her heart.

    I think I am quite right to wish for a change in the current cruel and inhumane system.

  2. wonderful speech Clare – maybe some of the Carers who follow in our footsteps will benefit,I really hope so xxxx

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