DSRF was privileged to speak recently with Jen, who has an eye-opening perspective on the Assisted Dying Bill, as a healthcare professional and a mother in the DS community. As we approach the final vote for MPs on Friday 20th June, Jen’s story is a must-read. Please share this story with anyone who has not yet realised the wider context that Assisted Dying will fit into, and how this change in the healthcare climate will affect people with DS.
I’m Jen, mother of D. who is 24 years old and has Down syndrome, and we are from Northwest England. I have been feeling moved to speak out recently to warn people about the dangers of the Assisted Dying Bill. I don’t think people have a clue how dangerous it is to introduce this as a law.
What is your background?
I am qualified as a Registered General Nurse, and worked as an advocate for children with disabilities for short time. I have worked as a family group conference coordinator to support families to develop a plan to prevent children going into care. I was also involved as a lay assessor when the Quality Outcomes Framework for GPs was introduced with regards to accessibility. I have worked in adult social care as a Care Coordinator / Assessment Support Officer. I am also a ‘Partners in Policy Making’ parent, and trained by a family rights group – they gave me an eye-opening training course, about personalisation, choice and control.
I am now retired. First and foremost, I’d describe myself as D.’s Mum – she is my raison d’etre and greatest joy.
With all the professional experience I have gathered over the years, I know how things work from the inside, and that’s why I can’t ignore the dangers and the attitudes that I know will shape the direction this Bill will take in practice. Back when I did nursing, we used to refer to people as ‘the hysterectomy in bed 5’: we’ve moved on and learned a lot more since then, but the dehumanisation definitely still exists, and I’m constantly on the watch for it.
Once we start with assisted dying, rates of use will go up and the system will get away with it, like they are doing in care homes already with DNARs (Do Not Attempt Resuscitation orders). Working in adult social care, I saw with my own eyes how blanket orders of DNAR were given out, to people with dementia and to other vulnerable groups. During Covid, a disproportionate number of people with intellectual disabilities died. There are so many reasons why I am worried about the Assisted Dying Bill, and it’s all from what I have experienced and been through.
I’m quite feisty and well equipped to fight for our rights, but I’ve seen that when some people get into a crisis in a hospital, they get ‘white coat syndrome’ and assume that the doctors always know best. However, the doctors don’t know your child. They may have training as a doctor but there is still a lot they need to know. There’s always a context that only the carer knows in depth, and unfortunately the habit of ‘othering’ the patient is very harmful and affects the kind of care they get.
What alarms you about the Assisted Dying Bill being proposed in the UK?
I think right now we’re on a timeline that isn’t progressing anymore but going backwards for people with Down syndrome. In the 1980s a lot of breakthroughs happened, and kids with Down syndrome were deemed educable, and moved out of institutions and back into the community, and life improved for many. However often the infrastructure to support these changes wasn’t there, and ground workers were often set up to fail. Now I think we’re seeing cost cutting measures, with money concerns really being put to the forefront. I am really convinced that Assisted Dying is all about money at the very bottom of the issue.
I am always guarded about things that are set up as shiny and all about doing good, because I’ve found that there can be darkness behind it. It’s a bit like family planning: it has origins in the eugenics movement. I am seeing a lot of comments from people online about who should qualify for an assisted death, describing some people as a drain, and having no value – but how do you measure value? You shouldn’t be dying just because someone else has deemed you unworthy: that’s my great concern. It’s really important for society to learn how to care and empathise, and how to slow down, because aging and death are part of life for everyone.
What do you think about general attitudes concerning people with Down syndrome?
There is a constant fight that happens around D. It’s nothing to do with her: my daughter has taught me so much and is an absolute joy. It’s a fight with society, to say she is worthy of having an ordinary life, worthy to enjoy a normal life.
This battle starts at the moment of conception: this is not just about assisted dying. About 98% of women who find out they are pregnant with a child who has Down syndrome have an abortion nowadays. You can’t tell me that 98% represents an informed choice on this. There’s a huge amount of fear and pressure put on women, and a lot of the time that’s why they terminate. It’s a really frightening slippery slope to force women on. There are incidents that are horrific and I have never been in those situations. I am so glad, however, that I didn’t have a test that would have told me D. had Down syndrome before she was born. I had a wonderful pregnancy with no pressure and I never had to justify why I wanted my child to live. I was living in Holland then, and didn’t experience any pressure there at the time, but here in the UK now it’s all medicalised. I am so glad I didn’t have to go through all that process and could just sail through my pregnancy. In the end, it’s such an unknown – you can’t really plan. Everyone thinks differently but I didn’t feel like dreams or aspirations were wrecked – I was just waiting to see the baby that was in my tummy, and it was D.
The night D. was born and the midwife told me she had Down syndrome, I held her and thought “maybe it’s just you and me now, little one, because dad might find this too much”. For me the oxytocin was rushing in and I was totally in love, but I was worried about how my husband would cope. I kept giving the baby to him all the time, and by day three he was in love too. I was wondering, ‘will she ever do this? will she ever do that?’. Now I laugh when I think about how ill-informed I was, but so many wrong things are told to mums and it’s all the information they have. Reactions of staff are often terrible, and those first reactions can inform your initial bonding with your child. One doctor asked my friend at her child’s birth: “have you noticed something about your child? He has a face you might have to grow to love.” These attitudes are not coming from the parent but show the bias of the healthcare professionals.
I’m not saying it’s easy, but we have no guarantees in life, and being a mum isn’t easy anyway. I think about my friends who are mums of teenagers: they have some different concerns than I do, but we all have concerns!
Please tell us about the challenges you have encountered in trying to get adequate care for your daughter.
I’ve seen a lot of twisting of the rules to suit what organisations want to do. For instance during lockdown when people could still go to school, I got a phone call saying that D. ‘couldn’t’ go to college: they just applied a recommendation without discussion with her or us, and made it seem like a rule. Blanket bans on people like D. being able to access college were a form of ‘othering’ and discrimination, and they were applied at unnecessary times.
D is definitely the ‘comeback kid’ – she has been through a lot and come back every time. Some things were missed when she was a baby and mistakes were made in her care. Her hips have been dislocated since she was a child, and she is now in a wheelchair. This has put strain on her heart and she gets tired really easily. It all stems from what was missed when she was a baby.
She had a Ventricular Septal Defect (VSD) surgery to repair her heart at the age of 14 months, and there were unnecessary post-operational complications, caused by a push to get beds cleared on the unit to make way for the next day’s operation list. This resulted in her having to be put on life support, on a Cardiac ECMO (Extracorporeal Membrane Oxygenation). It was the catalyst for a horrific set of events. We had to bring our young child home tube-fed, she had an extremely diffuse EEG after prolonged resuscitations, she lost all muscle tone and had to have a double ileostomy as a result of a perforated bowel from sepsis. Often we say she is like Lazarus – she has really beaten the odds to be with us still.
Some recent incidents have also been traumatic due to the way we were treated. During lockdown she went into sudden onset cardiac arrest in the early hours of the morning. Thankfully I heard her and went running in to work on her. The paramedics arrived and got her to hospital, and the very first thing the A&E consultant asked is, ‘what is her quality of life?’. She asked me this at 3 o’clock in the morning in the middle of the hospital corridor. I went nose-to-nose with her and said, ‘Don’t you dare ask me that, you would never ask this question if she didn’t have Down syndrome. Get back in the room and save her life, do what your Hippocratic oath asks of you!’
I have a lot of contacts now in healthcare, and thankfully we were granted access to D. even when she was ventilated, and I worked hard to make her humanity evident to people. I put up photos of her everywhere, and I spoke to all the staff who knew her. I was with her all the time and calmed her down when she was extubated by being there, and they allowed me to be there as part of the team. I asked them to treat her just like any other 21 year old – something that definitely didn’t happen when we were in A&E.
Everyone who meets D. loves her, but I always have to prove her worth before they meet her. Unfortunately when people see things on paper, they make biased assumptions. I had to fight to get a defibrillator implanted, and only one place was willing to fit it: after the fact they said it was the right thing to do, but it only happens after a lot of discussion and effort to humanise her to professionals.
As I get older, I think a lot like that MP Daniel Francis who spoke at the debate in Westminster recently, who asked ‘what happens when I am not there?’. He too has a daughter with a learning disability and knows this law won’t have the safeguards that are needed. I am like a lioness on her behalf, but I won’t always be there.
Does the healthcare profession value your insights or help you in ways you need?
I think professionals are most often doing what they can to help, but the bigger frame they have to fit into often doesn’t seem to value life.
It’s helpful when we are able to respect each other’s expertise, and we need each other. At this point, our GP office knows I won’t waste their time, and that I have never been proved wrong when I have a concern. They will see D. that day if I ask for it. D. can present as aclinical, but she could be in renal failure, and I know how to spot signs they can’t see. I know when she is ‘off’ simply because I know her so well.
The problem is that you can never afford to take your foot off the pedal, and without other people helping, it gets harder as you get older. Resilience is my best and worst trait. I am well informed and well educated on these issues, and sometimes that leads to people thinking you’ll get on and do it, and even do their job for them.
I asked for some support from the local hospice for advance care planning, as D. is life-limited. When it comes to my own daughter, what I can do for someone else actually can’t be done by me. I need a witness and support. I know that the Learning Disability nurses are over-stretched, but it was really disappointing that they simply posted paperwork for advance care planning through my door and left me to it. No matter how capable I am, I am still a mum who has feelings: this is my daughter and I can’t fill out paperwork like that on my own.
What do you think about the likelihood of coercion and mental capacity issues in relation to this Bill?
The communication needs of people with Down syndrome are absolutely not understood – professionals cannot get their heads around capacity and are still wrangling with the mental capacity act.
When D. was in hospital a few years ago, the charge nurse breezed in in the morning, and said “so a mental capacity assessment has been done on D. …”, and I stopped her right there and asked, ‘When??’ I was there with her all the time, and I didn’t see any mental capacity assessment being done. I was told that it was done at 3am – when we were both asleep!! Even if they had woken her, how can you carry out an accurate mental capacity assessment on someone who has been woken up in the middle of the night? That is a falsification of a document – I asked the nurse if she was simply keeping her KPIs up, and told her that this was disgraceful.
Unfortunately these kinds of bad practices already happen! They will probably introduce quotas for how many people they need to help die, and the majority of people will be totally unaware of it. They introduced the fragility scale during Covid and didn’t tell people about it, so many were forced into things they didn’t know was a possibility.
My big concern is that admin staff are just looking at numbers, and that doesn’t translate into the worth of a life.
I am really concerned about the coercion issue. My daughter is always saying ‘sorry mum, my brain is mush’, and it’s because she is tired – I reassure her and I know how to help her understand. However, when she got to the age of 18, suddenly professionals won’t discuss things with parents in the same way, and you need to go through the Court of Protection to get the right to be consulted – but who has the money to go through all that?
I am also appalled about the fact that amendments to the Bill to protect people with intellectual disabilities weren’t approved. The whole Bill is being rushed and rushed, and isn’t getting the publicity and scrutiny it needs. It isn’t Love Island, so it isn’t hitting the headlines, but we’ll all be affected by this in a much bigger way than people realise.
When people get older and tired they look to professionals for guidance and advice, and these same professionals are stretched and pressured and may have biases that they are not aware of. They may make decisions that will have horrific consequences.
They say that the Bill has strong protections like needing two doctors who agree, but DNARs also needed that, and look how that turned out. Who will vet these doctors and make sure they aren’t Dr Kevorkians? Doctors already aren’t trained in many things they need to know. I think it’s a horrific scenario.
How do you keep a positive outlook among all these serious issues?
I think in the end, death is part of life. It’s really important to focus on dying a natural dignified death, not prematurely ending life because the person doesn’t feel seen or valued. It’s possible to live and die really well even with pain, illness, age and disability. However, I always say to my husband, don’t ever pull the plug on me, because you know I will be fighting to get back! Valuing life like this has always been innate to me. I have seen families who have kids with many different conditions, and they adore and value their children’s lives. People who are on the outside don’t know the person and their value. Cost will never come into it with me – there is enough money in the world. In the 80’s we were going in a better direction than now – right now everything is commodified.
I wish I could bottle up all the love and joy I have from my daughter. She is just herself. She doesn’t often ask about how having DS makes her different – and to me, she is just my daughter. Sometimes she notices that some things aren’t fair, but I encourage her and remind her that it’s like that for everyone in some way.
There are some wonderful things we’ve been able to do recently. We were on holiday in Menorca and were delighted by the accessible beaches that could be reached by beach wheelchairs. It made me think when I came back home, we are by the ‘leisure peninsula’ of England and yet no-one with a wheelchair can access our own beaches. A friend in an organisation called ‘Make It Happen’ put me in contact with a local councilor who was able to draw down funding from the local authority and the NHS to realise this dream, and we got beach wheelchairs that people can use free of charge, with one dedicated to my daughter. She is definitely the catalyst for helping others and making their needs evident, it’s her legacy to help others access the simple pleasures that are denied to them.
Seeing my daughter’s joy every day helps me through everything and gives me the motivation to fight everything that comes in my path that is a threat to her. Right now, the new threat on the horizon is definitely Assisted Dying, and I want other parents to wake up to where this could lead.
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