Real families, real stories – the founder of Rett UK shares her experiences
What would it feel like if someone told you that you that you weren’t able to make decisions for your child which you thought were in their best interest?
Managing Director Philip Warford of Renaissance Legal interviews Yvonne Milne whose daughter, Clare, has Rett Syndrome. Yvonne is also Founder and President of our charity and she has kindly shared her story here…
Philip: Yvonne, thank you so much for agreeing to be part of this interview. Firstly, please can you explain what Rett Syndrome is for those that don’t know, and tell us a little bit about why you decided to set up Rett UK?
Yvonne: Rett syndrome is a complex genetic neurological disorder, it affects one in 12,000 females and a few males. Although signs of Rett syndrome may not be initially obvious, it is present at birth and becomes more evident during the second year.
I founded RETT UK in 1985 around our kitchen table, and since then the charity has grown to be the leading provider of information to not only families, but also medical professionals new to the world of Rett syndrome. The charity can provide access to specialist support services which are critical in providing care for people with Rett.
Philip: Tell us about your daughter Clare.
Yvonne: Clare is now 35. There are different genetic mutations of Rett and Clare has one that results in severe physical disability. She lives in a residential care facility, but comes home every other weekend. She needs round the clock care. The main reason for taking part in this interview is to help families that are in a similar situation to us and hopefully raise awareness. In 2012 a situation occurred which made us realise that as Clare was over the age of 18, we didn’t legally have a say in decisions relating to her welfare, even though she didn’t have the capacity to make decisions for herself. In 2012 we applied to the Court of Protection and were awarded a Health and Welfare Deputyship under the Court of Protection – 1 of only 300 Health and Welfare Deputyships awarded in the country.
Philip: And why did you apply for a Health and Welfare Deputy order?
Yvonne: Prior to 2012 we hadn’t experienced any issues with social services and other professionals in relation to Clare’s care. We had always felt that we were all acting in Clare’s best interest and never felt that we were being kept out the loop on decisions about her. This was until we found out that important decisions relating to her health and wellbeing were being made without consulting us.
Philip: So what changed in 2012?
Yvonne: During 2012 the manager at Clare’s residential care facility and her social worker felt that Clare was experiencing swallowing issues and wanted to increase further the thickness of her drinks. The care facility manager also got the support of the speech and language specialist (who, crucially, was not a Rett specialist) and requested a special X-ray to be taken of Clare swallowing to support their decision.
Philip: What were your thoughts on this decision?
Yvonne: With my extensive knowledge of Rett syndrome I knew that this had to be looked at as a much wider issue. With this disorder you can’t just look at issues in isolation because taking action to address one problem might well impact on other parts of the body. It is a very fine balancing act with all medication and treatments.
Philip: So, as any concerned parent would do, you put your point across to the people involved. What was their response?
Yvonne: They became intransigent in their views, refusing to consider the wider picture and became hostile towards us. We complained to the residential home management and social services and we were subsequently persuaded to participate in a best interests meeting.
Philip: Please can you tell us what happened then?
Yvonne: What was called a ‘best interest meeting’ was held two months after we raised our concerns. We felt from the start of the meeting that this discussion was more to tick a box rather than actually discuss our concerns and reach a way forward that we were all comfortable with and what was safest for Clare. None of the guidance about holding such a meeting was followed – there was no agenda, we had no contact with the chairperson of the meeting beforehand and it seemed obvious to us that the professionals had all met prior to this meeting (which we found later to be the case). They had already made their decision and had established exactly what they wanted to do and say. It felt to us that the professionals were merely going through the motions, closing ranks and that the meeting wasn’t run in the most transparent and fair way.
Due to Clare’s age we felt that the professionals thought we shouldn’t have a say in our own daughter’s care and treatment. We asked for evidence based research in Rett syndrome from the professionals, to back up their view that thickening Clare’s drinks would stop Clare aspirating. No such evidence was ever provided.
Philip: How did this make you feel?
Yvonne: We honestly felt like our daughter was being taken away from us. We were convinced from our own research that thickening Clare’s drinks further could potentially be a danger to Clare’s overall health and not help her.
Philip: And what did you do?
Yvonne: After the meeting we went to work and spent time and money on extensive research and obtaining specialist assistance from an independent speech and language therapist who specialises in Rett syndrome. The therapist agreed with our view, after spending time with Clare, watching her eating and drinking in different situations; both at home and in the residential home. She then produced a comprehensive, evidence-based report, which was circulated to all parties.
This professional report by a speech and language therapist specialising in Rett syndrome played a crucial role in resolving the situation, as did my husband and myself becoming Clare’s legal Health and Welfare Deputies. Following this we convened a second Best Interests meeting, properly managed and constituted, at which the report was discussed. At this meeting the opinion of the expert speech and language therapist was adopted by everyone involved.
Philip: You mentioned about becoming Clare’s Health and Welfare Deputy earlier in the interview, can you tell us a bit more about this?
Yvonne: After the first best interests meeting, we applied to the Court of Protection to become Clare’s Health and Welfare Deputies, to stop a similar situation happening again. We notified all parties as we were obliged to do. As a result, the Council Social care department, (represented by the person involved in the disagreement from the beginning) sent a letter of objection to us being appointed as Clare’s deputy to the Court of Protection. We discussed this with the expert solicitor, who we had used for the application and understood our situation. He felt our case was very strong and submitted a response to the Court on our behalf. We were then summoned to a meeting with the authorities, who stated that for reasons they would not share with us, they had cancelled a planned second Best Interests meeting. When we arrived home after that the meeting, we found a message from our solicitor that the court had pronounced in our favour and that we had been awarded both Health and Welfare and Property and Affairs Deputyships by the Court of Protection.
Philip: Do you have any final thoughts to share with families who may be in a similar situation?
Every family’s situation is unique, however when we were left in a position of not knowing what to do; having the Deputy order in place helped us to act in Clare’s best interest. I hope this interviews helps others who may be in a similar situation and also raises awareness of the Court of Protection process. I would recommend speaking with a specialist in this field to ensure you get the best possible advice.
Philip: Thank you Yvonne
Renaissance Legal specialise in working with families and carers of disabled and vulnerable individuals, helping them plan effectively for the future using Wills, Trusts, Powers of Attorney, Court of Protection applications and Inheritance Tax Planning. You can contact Renaissance Legal on 0845 505 60 50 I info@renaissancelegal.co.uk I www.renaissancelegal.co.uk
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