What if we viewed lived experience as an asset? As an asset of professional, economic,…
Dr Daniel Poulter MP, did you hear me? You probably won’t remember me; I gave a speech at an event organised by Together for Short Lives in Parliament in November 2013 which you attended. You had your picture taken with me and we chatted, and we both gave speeches. Did you listen? Did you get my message? Has anything changed as a result of what I said?
Probably not. I don’t hold you wholly responsible, as it takes more than one person for things to change. I hope you heard me. I hope everyone in that room heard me. I can only do so much; I can tell you my story, tell you what it’s like and tell you about others in similar situations, how we have to fight for everything, how things could be improved and what needs to change. But you need to listen, take on board what I (and others) say and actually make the changes or start that motion. You are the holder of the power to change things. We need you to fight for us, to educate your fellow MPs and important and influential professionals, and to make sure improvements are made. I can only do so much.
I will do all I can. I want to be heard, and I won’t give up. I will tell as many people as I can, until I’m blue in the face. I will be heard. I won’t stop until things change, until things improve and until we get the care we need in the way we need for as long as we need. You get holidays, but what you don’t think of is the fact that we don’t. Our illnesses are with us every minute of every day, and our families are carers for every minute of every day, 365 days of the year. Some have professional carers in, hospice care and respite, others don’t, but carers don’t have holidays. They still worry, fight and care even when they’re having a perceived break. So, when you next have a day off, a holiday or when you get home from work every day, spare a thought for those of us with illnesses and disabilities, and our families who care for us, as we don’t have a working day, a day off or a holiday, we’re “at work” suffering and our families caring 24 hours a day, 7 days a week. We don’t get a break.
|My mum (who is my main carer) and I
In the speech I gave I spoke about the huge jump from children’s to adult’s services, going from being on a children’s ward with my mum with me all the time making decisions for me, to being on an adult ward with five dementia patients making all my decisions by myself. Can you imagine that? Can you imagine the sudden change from being classed as a child to being classed as an adult? Most people think becoming an adult is a good thing. You have more rights, you can vote, you can buy alcohol and cigarettes and you can leave education and get a full time job or you can go to university. I, on the other hand, as a person with a chronic, life limiting illness, didn’t think becoming an adult was always good or easy. It meant being on an adult ward, being the youngest on the ward, sometimes by as many as 5 or 6 decades, and having to make every decision, often without support as your family aren’t there when the doctors come round. They don’t think that you’ve only just become an adult and still need support. They suddenly expect you to be an adult. How is a young person supposed to have the experience or maturity to deal with all of this new found responsibility? We’re adults by age, but we aren’t mature adults yet and don’t have the knowledge or experience of middle-aged adults.
On children’s wards you are made to feel special and are rewarded and constantly told you’re brave and courageous, but on an adult ward you can be made to feel like a burden and just a drop in the ocean. This is not always intentional, but nurses don’t expect to have to hold your hand or be with you all the time. Plus wards aren’t equipped for the needs of young adults, especially young adults (or any adult) with learning disabilities. Those of us with great needs who can’t look after ourselves (i.e. can’t wash and dress ourselves, can’t walk, can’t go to the toilet and need a lot of support) are almost looked at as being demanding. It’s not our fault, but we can be made to feel like that. Nurses are overstretched and don’t have the time to dedicate to an individual patient. I was often left with my bed unchanged and me unwashed and unchanged because they didn’t have the time as I need a lot of help. I’m not blaming the nurses; I’ve had some horrendous nursing and some fantastic nursing, but the problem is they don’t have time as there are too many patients and too few nurses.
I hope my speech in Parliament has helped. The reason I spoke at the event is to educate the decision makers, to show what the problems are and to help things change and improve.
I gave another speech last week to the Children’s and Young People’s Health Outcomes Forum Summit and talked about a number of different things, including talking about the disbelief of healthcare professionals who didn’t understand my condition so concluded it didn’t exist and the huge effect it has on me even now, my healthcare professionals not listening to me and to what I wanted out of life, my mum being treated like a neurotic mother, and the changes I’d like to see made in healthcare (to read my speech click here). The most crucial point I made was how important it is that doctors, nurses, MPs and other professionals listen to their patients/constituents. As someone who has very little control in their life, the one thing I can control is my opinion and the ability to make decisions. However, I only have this control if people listen to what I am saying. I can’t make people listen, and if they don’t, my thoughts and opinions are worthless. Being listened to is so important. We should all be listened to, even if the other person doesn’t agree with what we’re saying. It’s our fundamental right. I was talking about being listened to in terms of health care and general life, but I’m mentioning it because it is so vital that MPs, professionals and the decision makers listen. They can’t make the right decision without listening to their patients/constituents. They are the ones with the power, but we are the ones living with our conditions and living with the decisions these people have made. They can’t make the right decision or understand the problems without listening to us. We need to be listened to.
You never know if anyone has listened unless you get feedback and something changes. I didn’t hear back after my speech, which is why I assume nothing has changed. That’s the problem with a lot of these things; you never, or hardly ever, get feedback, and change happens slowly. Often when you do get feedback, it’s a load of information that does not answer your question or prove that change is happening, or will happen. For example: I have written to my local MP, Rebecca Harris, numerous times asking her to do something about the wheelchair access in my local area. I can’t get into the shops as there’s no dropped kerb, I can’t get into the park – which may I add is behind the council offices – to walk my dog as there is a barrier in the way, and there is a huge lack of dropped kerbs (or the dropped kerbs that are there aren’t level with the floor so it feels like you’re jumping off beachy head every time you go down one) in my area. Also, most nature spots are completely inaccessible to wheelchair users due to kissing gates. It’s dangerous, extremely painful, and it’s also illegal – surely MPs are familiar with the Disability Discrimination Act and the Equality act 2010? Rebecca has written back to me, quoting about budgets and the money being spent in the UK, but that has made no difference to the fact that, 3 years on since my first letter, I still can’t get into the shops, the park and have to hurt myself in order to get around in my local area.
I do what I do not only for myself, but for the benefit of others. I have been thanked for giving a voice to those who don’t have one, which is my ultimate goal. Not everyone can speak for themselves, whether they have a physical disability, a learning disability, or just not the confidence or ability to speak up for themselves. I will be their voice. I have the confidence and ability to speak up for others, and I have the determination to see it through. I will not give up. My aim in life is to make a difference, and I will fight for as long as I have until change happens. I write, I speak, I blog and I have done video and radio work. Wherever my fight takes me, I will fight for myself and others. Change will happen, and I for one will not rest until it does.
So Dr Poulter, what can I do to help you make the right changes?