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Baclofen and Epilim (no syringes being provided
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Peaches66
Community member Posts: 2 Listener
My son has cerebral palsy and epilepsy, so needs medication several times a day . We were supplied with syringes from his community nurse while he was a child , but now he has gone into adult care we cannot get syringes to give him his medication everyday . I have phoned our doctor , who said the community nurses should supply them , however we contacted them through the adult learning disability team , but they won’t supply them , so I went back to my sons doctor , who tried ordering them , but thevon line prescription order won’t allow him to do so . I asked if they had a policy , but they don’t . Has anyone had this same problem as I need help with this problem . Thank you
Comments
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Hi @Peaches66
I'm sorry to read that you having such difficulties in obtaining the medical supplies that your son needs. I'm going to tag in my colleague @Jean_Scope who may have knowledge about what the next steps are.
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
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Hi @Peaches66
Thanks to @Richard_Scope for inviting me to join this conversation.
Unfortunately, not the first time I have heard of this in recent years since NHS budgets got so tight. But if these syringes are essential to your sons health care because he can't safely take his meds without them and they can't show you a policy that says that they can't be prescribed then they need to sort it out asap.You will probably need to really fight your corner.If you decide to fight this these thoughts might help get a positive outcome:
- If you haven’t already made a formal complaint, using the NHS complaints procedure, you could do that, escalating the complaint as high as possible/necessary.
- involve your MP,
- ask for advice/support from the Patient’s Association https://www.patients-association.org.uk/ and Healthwatch https://www.healthwatch.co.uk/home
- Check out if there is a local advocacy service/Disabled people organisation which can support you
- If you can network with others this has effected consider starting a campaign: https://www.scope.org.uk/campaigns/community/diy-toolkit
I'd be interested to hear what outcome you get, good luck
Best Wishes
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist
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Thank you very much for your help . I will keep you updated on the out come . I will fight this all the way . Again thank you .
Josephine
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