My sister is 43 an has an undiagnosed disability (my mum would never agree to having her tested when she was younger ) She recently has been diagnosed with diabetes an doesn’t understand how serious it is , how it works , no matter how much I explain she doesn’t understand! . She is also very overweight an has recently developed ulserated legs , tonight I went there an her legs where so bad the whole pads were wet threw ( I changed these myself , which I can’t do every day as I live 2 hours away an work full time !! ) an no nurse has been for 3 weeks , upon her phoning her gp they told her if it’s that bad ring A&E ( she doesn’t drive an has little money an they told her to go an wait for a bandage change at a hospital 30 mins away ) I want to ring up an go crazy with them for leaving her this way , I don’t know where to start or how to get her diagnosed or how to get anyone else to listen to me because she’s an adult !! but because she has never been diagnosed with anything she’s treated as an able minded person on paper ! How can I help get her diagnosed without being fobbed off by drs!! I’m genuinely concerned she’s going to end up seriously I’ll or losing her legs as a result of this . She lives in a 2 story flat an isn’t able to get up an down the stairs anymore , she is on normal universal credit an should be on pip or disability allowance an 100% needs a carer while she’s so poorly . Please can someone/ anyone ! point me in a direction of where to start .
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Adult social services speak to them explain the history and what’s happening now your sister needs a safe guarding raised on her and you need a duty social worker to visit her urgently and set up something and they can also help push the doctors to act. Also speak to the practice manager at her surgery and if the surgery won’t help as they should as they have community nurses ask the surgery for their Patient advice Liaison number and speak to them they are the complaints people. I would also speak to the carers association if you can and tell them the situation the history upto now and see if they can help and advise as well. Ideally your sister needs a diagnosis and benefits and support so try these numbers first and see how you get on and come back and let us know how that goes. I hope you get somewhere now.
Oh dear, I feel your frustration and rightly so. I take it your sister lives on her own. Just wondering how she has managed to get through school and no-one including teachers has picked up on this. Firstly I would ring the surgery and make an appointment for your sister that you would be able to attend with her, you need to get the GP on board and get his support. He could make a referral to have her assessed. Also she needs her dressings changed regularly, so this should be organised. I understand your working and don’t live near your sister but I do think if you can make an appt that you can attend with your sister and get your worries for your sister across should help. Failing that you would need to ring your local authority wherever you are in the country. Look it up if your not sure. Ask to speak to the Adult Social Services Team and explain everything. Hopefully they can give you advise, ideally a social worker to do an assessment. This could take some time, I live up North and waiting time for everything is shocking. Check out where your Carers Centre is too as they are usually a good source for information as well as supporting you and guiding you in helping your sister. Good luck, keep in touch and feel free to ask anything. x
Unfortunately I am 7 years younger than my sister so anything to do with her schooling would of been stressed to my mum who as I said would never agree to get her tested, she struggled to admit there is anything wrong with her . (Which now is taking its toll on me an my other sister who are trying to get this sorted for her)
I’ve spoken to her GP this morning an after explaining the situation was basically told “If her legs are that bad , ring an ambulance or 111” . I also learnt that she has been talking herself to the surgery- the nurse has not been coming to her , her legs are seriously bad & I have encouraged her today to please go to the hospital but she’s struggling with this as she doesn’t want to sit alone .
I have also been in touch with my sisters “keyworker” - we didn’t even know she had a keyworker till today! (But there was no answer so I’m waiting on her getting back intouch)On talking to my sister she states that she’s had this keyworker since the 14th April , around the same time she was diagnosed with diabetes , but also states she’s got this keyworker as her boyfriends keyworker arranged it for it . (Her boyfriend has Asperger’s , dyslexia an a lot of other things to list) . I’m just trying to piece together what is what as my sister has a tendency to not tell you anything we consider important.
Your local carers centre is a good place to start for help with benefits. GP sld refer her somewhere. For diagnosis also ring her local social services for help with care
It will not lead to a quick resolution for your concerns but please consider the possibility of sharing your worries about your sister with "The Patients Association" !
Over recent years this Charity has been aware of a great deal of poor care and may well be able to help and advise if they are made aware of your worries.
Best wishes, Malcolm // Dr Malcolm Rigler - Retired NHS GP
The Patients Association - patients-association.org.uk
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Your post shows the fall-out when a parent cannot bear the loss of the imagined life, when the future can seem scary and unknown and it sounds like your mum just could not let the reality in. Going through that grief for parents takes courage and can be hideously painful, it can bring fear and shame and it will unearth buried difficulties, but it has to be done for everyone's sake. Having faced this means that you can then get to know the child you have and make it easier to help meet their needs, it allows the child be who they are and let siblings form healthy relationships within the family. The price of your mum's denial is that you are left doing what she could not in the worst circumstances; getting her into a system that could have been there for all of you, supporting your sister her own life at her own pace with her own networks. As someone who experienced the pains and the challenges and can now take delight in my son, I hope that you harness some healthy anger to that end. Don't be afraid to push your GP and other medical routes or to be a nuisance with social services and be prepared for the push-backs. Do what mum could not, let them know what your sister cannot do and where she needs help so that you can enjoy a real relationship with the person she is. You lost the right to have that relationship because your mum was in the way, I hope that can change now.
Try to find the contact for pip in your area too. You should be able to get money for her even with just what you said in a way even though diagnosis would help too.
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