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?
Our Managing Director Philip Warford interviews Yvonne Milne, Founder and President of the charity Rett UK. Yvonne’s daughter Clare has Rett Syndrome, and we welcome Yvonne to the Renaissance Legal family where she kindly shares her story…
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. Something happened in 2012 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 I knew that this had to be looked at as a much wider issue. With Rett 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 medical team. What was their response?
Yvonne: We complained to the residential home management and social services and we were 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, spending time with Clare, watching her eating and drinking. She then produced a report, which was circulated to all parties. Following this, a second Best Interests meeting was arranged at which the report was to be discussed.
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 summoned to a meeting with the authorities, who stated that for reasons they would not share with us, that the second Best Interests meeting had been cancelled. When we arrived home after that 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 – 1 of only 300 joint Health and Welfare Deputyships awarded in the country. As a result we convened a new, properly managed and constituted best Interests meeting, where the opinion of the expert Speech and language therapist was adopted.
Thank you Yvonne. For more information on Rett Syndrome and to see the amazing work of the charity click here.