This an article I have written on the advice of Isabella’s Physio, it will hopefully be read by the professionals that deal with Isabella and who knows who else….I copied relevant parts from my blog..
Life on the other side…
I am Mummy and Full-Time Carer to a delightful 2 year old girl who has an undiagnosed medical condition. At a young age she has already undergone an MRI Scan, Lumbar Puncture and several blood tests, all of which to date have come back normal. It has left the medical professionals dealing with her puzzled, as she is severely disabled and delayed in her development, but there is no answer as yet to indicate why.
Living with our daughter’s condition is hard work, as she requires around the clock attention in the day, as she cannot do anything for herself. She cannot walk, talk or even sit unaided, despite all of this she is the happiest girl I know. I say it is hard work, but I love it and it is enjoyable, and I wouldn’t have it any other way. Living with her condition isn’t stressful; it is actually the professionals and the so –called system that we deal with that make life stressful for us. It was suggested to me by one of the professionals that deals with my daughter, (after another one of my rants) that I write an article to try and make the professionals understand what life is like from a parent’s perspective.
The only way for you to truly begin to understand is have a certain amount of ‘Empathy’ – the power of understanding and imaginatively entering into another person’s feelings. Put simply putting yourself into my shoes – the shoes of a parent of a disabled child -a disabled child without a diagnosis.
Whether the professionals choose to read this, let alone take on board what I say remains to be seen, nevertheless I will write it in the hope that someone listens and begins to understand what life is like and may be start to make changes for the better.
Over the last 15 months we have had lots of communication with professionals regarding our daughter including; several meetings, appointments, visits, letters and phone calls. Most of which have not been very clear. A lot of times I have looked on the internet for clearer explanations or even asked fellow Mums who are in the same position, to explain, as they have already been through it. I understand that time is limited and the number of patients seen is vast, but just a few lines in plain English would make life easier. So much unfamiliar, medical jargon and terminology is thrown around and it is hard to keep up. Then at other times the information is not unclear, it is just not there. For example we had been waiting for what seemed like an eternity for test results. We received the letter which was two lines stating that the results were normal and we would be seen in 6 months! It would have nice to tell us what was going to happen next. It is hard enough not having a diagnosis for our daughter, but made harder when it feels like we are being left in limbo. As parents it feels like there is no urgency, no-one is any hurry to find out what is wrong with our daughter.
Our daughter has a team of professionals that make home visits. This I feel needs to be managed better, as I was surprised when I found that they don’t communicate with each other and that any test results are not communicated to them either. It surely would make sense for them all to work together and know how each other support my daughter. As well as being up to speed on where we are on my daughter’s diagnosis. What was even more surprising during a recent meeting was we were asked who my daughter’s physiotherapist was! Communication has always been key in any situation.
Added to this I think it would be better, if as parent’s we were more involved in the managing of our daughter’s care. I feel that we are given equipment for our daughter without being able to give any input. Granted we are not medical professionals but we deal with our daughter every day and know her preferences and likes and dislikes. We also have the benefit of speaking to other families in the same position, who can make recommendations and suggestions based on their own experiences.
I pinned all my hopes on the professionals that would be dealing with Isabella having the answers to all the questions I had. Sadly I was disappointed, as most of my questions were not able to be answered. Some of the questions were about items I wanted to buy for my daughter. I had actually held off buying them, as I thought the professionals would know best and could point me in the right direction and make recommendations – they couldn’t. May be it’s me and I expect too much and my standards are too high.
High Standards are something I always have had. I am a Primary School Teacher by trade. No matter what job I have undertaken from being a Travel agent, a Holiday Representative to a Holiday Entertainer, I took it seriously and would make sure I did my upmost to give the best possible service.
When I was a Travel Agent I would treat every customer and holiday enquiry like they were the first of the day. I would listen and make sure I found the best holiday to suit their needs. It didn’t stop there however, I would try and remember their names when they came in to make payments and even if I was overworked (it wasn’t for them to know) I would always smile and give great service. When the shop closed at 5pm I wouldn’t leave until all the customers I promised to call back had been. Even when I got home I would watch holiday shows and programmes to build up my knowledge. I even dragged my husband around different hotels when we were on our own holiday, so I could go back and tell customers of my first-hand knowledge! Doing the best and going the extra mile is something that has been instilled in me from when I was little. I was never trying to outdo anybody I just want to give the service that I would expect to be given.
The same can be said for when I was teaching. I know society think teachers are overpaid, have it easy and get loads of holidays, believe you me, we earn and deserve those holidays. Contrary to popular belief we don’t stop working the minute the bell rings at three. I, (like thousands of teachers do) didn’t leave school until 5.30 and then took work home with me; I would work weekends and at times until the early hours of the morning! I am not telling you this to brag, I am telling you this to make you understand that I loved my job and wanted to make sure that I was doing the best for my pupils and my school. So I guess I expect other people to do the same in whatever job they undertake. For me anyone who works with children should want to do the best by them, if not they are in the wrong job.
I have also found when we go to appointments that we have been waiting for months on end, that the professionals we meet aren’t always prepared, it would be advisable for them take a few minutes before we come in to familiarise themselves with our little girl, by reading through her notes. That way they will avoid coming unstuck and asking questions that are glaringly obvious. It is important to remember that they see lots of us parents and have lots of appointments, we on the other hand see them and it may be only once or twice a year for an hour. So you can imagine it is something that we look forward to and we hope to get a lot out of it.
It became apparent very quickly that life would now involve a lot of waiting; waiting to be seen by professionals, waiting for appointments and waiting for equipment. With this in mind it would be useful for professionals that know that there will be long wait for certain things to have contingency plans. This may mean doing a little bit of research on the internet to find an alternative item to fill that gap, whilst waiting. Trust me as parent, having someone tell you unfortunately you may be waiting sometime for this piece of equipment would be extremely frustrating, but being offered a suggestion that could be used in the meantime, would be greatly appreciated. As a parent you would feel like you and your child are really cared for.
Similarly it would be useful if the professionals were more knowledgeable and able to offer suggestions and recommendations on new equipment and resources. As parents our time in the day is taken up with looking after our daughter, a lot of the time our evenings are taken up to by researching new equipment and resources.
After finally being referred, it took 8 months for my daughter to be seen by a Pediatrician. That was 8 months of worrying, 8 months of living in the unknown, 8 months of awkward questions from strangers and family members; ‘Oh is she not sitting yet?’ ‘Can she not feed herself? ; In short 8 months of agony.
I truly believed that when we were finally seen we would get the help and support that was needed and quickly. How wrong I was. After an 8 month wait to see a Doctor, there was further waiting involved to see the individual therapists who would be helping my daughter. I know that the NHS is in desperate need of money and is understaffed, I get it. I certainly don’t blame the individuals, as their case loads are big enough and I guess we were seen as quickly, as was physically possible. But as a parent desperate to get your daughter the right support, waiting is extremely frustrating.
Most of the professionals I have met or dealt with over the phone I don’t find particularly helpful. In my experience the majority of professionals I have spoken to on the phone are short, unhelpful, blunt and on occasion very rude. Manners, unless I am very much mistaken don’t cost a thing. I am not expecting the person on the end of the phone to become my best friend, just to speak to me in a more pleasant way would be nice. I appreciate hospitals and Doctor’s surgeries are very busy and they probably have a lot on, but that is no excuse for being rude.
I am a firm believer in Mum knows best, but sometimes I feel that with some professionals that is overlooked. I spend all day with my daughter and know her inside and out. I know when she is happy or sad and hungry or tired. I know all of her quirks and mannerisms and I certainly know when something isn’t right. So nothing annoys me more than when I raise a concern and it is batted away without a second thought. I am trying to help you help my daughter. For example I had to practically beg to get my Daughter referred to a Paediatrician! It is extremely important for parents to be listened to. We may not be medical professionals but we are professionals of our children.
As a parent of a disabled child I am not asking for or looking for sympathy, but again will say that empathy would go a long way. On many occasions we have spoken with professionals who have bluntly told us, that we may never find out what is wrong with our daughter, she may never may never be able to do this or that. Just stop for second and think how you would feel if someone told you the same thing about your child, matter of fact like telling you what they had for lunch. It is not a nice feeling believe me.
To finish I will state that there is no consistency in the system. It fluctuates. On speaking to other parents from different parts of the country some have great experiences, others not too dissimilar from ours. The service we get should be the same wherever you go, but at the moment that is not to be expected.
Sadly from all my experiences over the last 15 months I no longer have any high expectations. If my daughter is due a new piece of equipment, I no longer get excited until I see it, as I know the wait will be a long one. If we are due for a Home Visit I expect whoever is visiting to be late and ill prepared. If we go to the hospital I expect to kept waiting for hours, without an apology or acknowledgement. If we are due test results I don’t expect to receive them promptly as promised, I expect that I will have to make a call to chase them up. If I have to make that or any other call I expect to be kept waiting. If I do finally speak to anyone I expect them to be blunt, short and uncaring. I expect all of these things because that is what has happened time and time again and if by chance it wasn’t as I expected, it is then a bonus.
I hope in some way this makes any professional understand a bit more about how it is on the other side. I haven’t gone into specific situations, but there have been several which were very stressful. I hope that from reading this, may be some changes, however small will be made.