diabetes and disability

[PhillDM]

Hi all,
this is my first time ever posting a thread, Please be gentle with me!

My question is related to my disabled sister who is a type 1 diabetic (and lives in Yorkshire). She is dependent on district nurses to administer her insulin (nurses come 4 times per day) which obviously ties her to her home. My sister has carers also coming in several times a day who can not take her out for more than an hour or so due to the fact that they can not administer insulin. My research shows that trained care providers are allowed to administer insulin, but I have been unable to find a care provider that will.

My question is: Does any one have experience of a care provider administering insulin please?

 

[noblehead]

Hi @PhillDM and welcome to the forum.

I wonder if you had a word with your sisters diabetes care team they may offer you (or appointed person ) some training on how to administer insulin, if nothing else it's worth asking them anyway, alternatively you could contact Diabetes UK who will advise further. Best wishes.

 

[PhillDM]

Thanks for your kind response.

I didn't explain myself properly I don't think. I actually do administer insulin to my sister when I am with her but I live on the South coast & my sister lives in Yorkshire. Hence part of the problem.

I have spoken with the diabetes team who have agreed to train a care company but it is social services saying that only registered nurses can administer insulin, but there are NHS documents on line setting out protocol to train care workers to administer insulin.

Diabetes Uk have suggested an insulin pump but we have already been declined this option by my sisters diabetic team! Really we are banging our heads against a wall and we need a care company that can administer insulin if possible.

Thanks again

 

[noblehead]

Quite a dilemma, I know when we had carers in for my mum they refused to give drugs, they would only hand them to her if they were in pill boxes but wouldn't take them out of the blister packs.

Not sure what to suggest, have you made the Social Services aware of the NHS document/protocol, if not send it over to them for the attention of your sisters social worker.

 

[PhillDM]

I emailed them the NHS documentation a couple of days ago & have just recieved a response confirming that they will not do anything to help & have passed the dilema back to Health Care.

When I have tried to speak with anyone from Health in the past I have gotten a brick wall.

It just seems that nobody cares, I've been trying for a year to sort something out and still have no resolve.

I just don't know what to do

 

[azure]

I know it's not an ideal solution but what about mixed insulin? It would mean only two injections a day so would theoretically give your sister more freedom to go out. I appreciate this might not be appropriate and may be a last resort option but I thought I'd mention it.

 

[Robinredbreast]

Thanks for your kind response.

I didn't explain myself properly I don't think. I actually do administer insulin to my sister when I am with her but I live on the South coast & my sister lives in Yorkshire. Hence part of the problem.

I have spoken with the diabetes team who have agreed to train a care company but it is social services saying that only registered nurses can administer insulin, but there are NHS documents on line setting out protocol to train care workers to administer insulin.

Diabetes Uk have suggested an insulin pump but we have already been declined this option by my sisters diabetic team! Really we are banging our heads against a wall and we need a care company that can administer insulin if possible.

Thanks again

I have a diabetes friend with mental health problems, so a nurse comes in everyday to administer her Insulin. The person, outside the family or a trusted close friend, must be qualified to give Insulin.

Sounds as though you need a care company with Nursing qualifications.

 

[AndBreathe]

Thanks for your kind response.

I didn't explain myself properly I don't think. I actually do administer insulin to my sister when I am with her but I live on the South coast & my sister lives in Yorkshire. Hence part of the problem.

I have spoken with the diabetes team who have agreed to train a care company but it is social services saying that only registered nurses can administer insulin, but there are NHS documents on line setting out protocol to train care workers to administer insulin.

Diabetes Uk have suggested an insulin pump but we have already been declined this option by my sisters diabetic team! Really we are banging our heads against a wall and we need a care company that can administer insulin if possible.

Thanks again

Are the carers your sister has visiting her actually NHS employees? I know some Trusts outsource such services to care providers, so this could be a factor?

If I'm totally frank, I don't actually know how the regulations work for those companies, but I can't think it would take a massive amount of digging to discover.

Good luck with it all.

 

[Robinredbreast]

I have a diabetes friend with mental health problems, so a nurse comes in everyday to administer her Insulin. The person, outside the family or a trusted close friend, must be qualified to give Insulin.

Sounds as though you need a care company with Nursing qualifications.

http://www.nhslanarkshire.org.uk/Se...n of Insulin by Nursing Staff final May14.pdf

 

[PhillDM]

Thanks for the thought, but my sister is actually on twice daily insulin injections already but, if she needs fast acting (which often she does) we need the district nurses to administer it, also my sister is unable to take her own blood glucose readings using a finger pricker. My sister uses the Freestyle Libre but even so there are times (e.g. when this is calibrating or bloods are changing so quickly) that we need a finger pricker.

Even if we reduced to twice daily visits from the nurses it means that my sister can't go very far from home. As any able bodied person my sister wants to go on day trips, go out for diner, and she really wants (and I actually believe deserves and needs) a holiday after all that she has endured over the last couple of years. It's not fair on her or me that she can only go anywhere if I go with her. Social services are totally distancing themselves & basically saying it's not there problem it's ours!

 

[PhillDM]

Are the carers your sister has visiting her actually NHS employees? I know some Trusts outsource such services to care providers, so this could be a factor?

If I'm totally frank, I don't actually know how the regulations work for those companies, but I can't think it would take a massive amount of digging to discover.

Good luck with it all.

No the carers are not NHS employees but compaines which are sourced by social services to provide care to my sister. We tried to get the NHS to fund the carers, then we probably wouldn't of had this issue, but the NHS won't fund the carers it has to come from Social services. And that's a major problem that social services and Health don't seem to want to work together.

 

[azure]

Thanks for the thought, but my sister is actually on twice daily insulin injections already but, if she needs fast acting (which often she does) we need the district nurses to administer it, also my sister is unable to take her own blood glucose readings using a finger pricker. My sister uses the Freestyle Libre but even so there are times (e.g. when this is calibrating or bloods are changing so quickly) that we need a finger pricker.

Even if we reduced to twice daily visits from the nurses it means that my sister can't go very far from home. As any able bodied person my sister wants to go on day trips, go out for diner, and she really wants (and I actually believe deserves and needs) a holiday after all that she has endured over the last couple of years. It's not fair on her or me that she can only go anywhere if I go with her. Social services are totally distancing themselves & basically saying it's not there problem it's ours!

Ah, ok - sorry for misunderstanding. Well, I think what you should do is put a complaint in writing to Social Services, tell them what you believe their obligations are and why they're not fulfilling them, and ask them to look again at your sister's care.

You've said they've passed the buck back to Health. I don't know whose responsibility it actually is so I can't give advice on that, but this sounds like it's affecting your sister's quality of life and that she's being disadvantaged because of her medical condition.

If you keep banging your head against a brick wall, it may be worth speaking to,your local MP or local councillor, and asking them to write to the council and ask for an explanation And a solution. I've found that can speed things up and concentrate minds in many circumstances.

 

[PhillDM]

Ah, ok - sorry for misunderstanding. Well, I think what you should do is put a complaint in writing to Social Services, tell them what you believe their obligations are and why they're not fulfilling them, and ask them to look again at your sister's care.

You've said they've passed the buck back to Health. I don't know whose responsibility it actually is so I can't give advice on that, but this sounds like it's affecting your sister's quality of life and that she's being disadvantaged because of her medical condition.

If you keep banging your head against a brick wall, it may be worth speaking to,your local MP or local councillor, and asking them to write to the council and ask for an explanation And a solution. I've found that can speed things up and concentrate minds in many circumstances.

Thank you, I think that I will follow your advice down the complaint root that you suggest along with the MP and local councillor because it is seriously affecting her quality of life.
Many thanks

 

[azure]

Thank you, I think that I will follow your advice down the complaint root that you suggest along with the MP and local councillor because it is seriously affecting her quality of life.
Many thanks

Good luck - and let us know how you get on.

 

[AndBreathe]

Thank you, I think that I will follow your advice down the complaint root that you suggest along with the MP and local councillor because it is seriously affecting her quality of life.
Many thanks

I think, as well as the detail of whomever it is's refusal or inability to administer your sister's insulin, I think the complaint does need to focus on her quality of life and the impact that being effectively homebound is having on her. I mean, there's the plain old benefits of fresh air and the likes of natural Vit D, through the benefits of whatever exercise your sister might be able to have if going out, through the lack of general human interaction, save for several brief (I'm assuming), transient conversations a day, and the impact on her mental wellbeing.

Thinking about things like Lunch Clubs, or Day Centres; do they have anyone who could administer your sister's medications? Whilst I know the mobile carers can vary enormously - seeing different people all the time, I'm wondering if a Day Centre or Lunch Club would be more stable in terms of the staff in attendance at any given time.

Sorry, that became a bit of a brain dump.

 

[noblehead]

No the carers are not NHS employees but compaines which are sourced by social services to provide care to my sister.

Hi again @PhillDM

Not putting obstacles in the way but there would have to be a continuity of carers to attend to your sisters diabetes needs, from using carers ourselves (through Social Services) the Care companies do tend to have a high turnover of staff and very often you don't get the same ones attending each day.

Not sure what the solution is but wish you luck in finding one. Best wishes.

 

[PhillDM]

I think, as well as the detail of whomever it is's refusal or inability to administer your sister's insulin, I think the complaint does need to focus on her quality of life and the impact that being effectively homebound is having on her. I mean, there's the plain old benefits of fresh air and the likes of natural Vit D, through the benefits of whatever exercise your sister might be able to have if going out, through the lack of general human interaction, save for several brief (I'm assuming), transient conversations a day, and the impact on her mental wellbeing.

Thinking about things like Lunch Clubs, or Day Centres; do they have anyone who could administer your sister's medications? Whilst I know the mobile carers can vary enormously - seeing different people all the time, I'm wondering if a Day Centre or Lunch Club would be more stable in terms of the staff in attendance at any given time.

Sorry, that became a bit of a brain dump.

I really appreciate your thoughts, thank you. It's nice to know that you guys are trying help me by coming up with ideas, you have no idea how much all of your input means to me. Thankyou. Also, you make some good & valid points for me to add into the complaints, and I will look into lunch/day clubs. Thanks again

 

[PhillDM]

Hi again @PhillDM

Not putting obstacles in the way but there would have to be a continuity of carers to attend to your sisters diabetes needs, from using carers ourselves (through Social Services) the Care companies do tend to have a high turnover of staff and very often you don't get the same ones attending each day.

Not sure what the solution is but wish you luck in finding one. Best wishes.

You are absolutely correct, the continuity of carers is something that is essential to my sisters diabetes care being managed by a care company & this is very difficult to achieve. I 'm just hopeful that if I can find a care company that will administer insulin that they might have a lower turn over of staff & be able to provide a primary carer. It's a long shot I know but it is the only solution left that I can think of. Many thanks for your support, I appreciate your input.

 

[AndBreathe]

I really appreciate your thoughts, thank you. It's nice to know that you guys are trying help me by coming up with ideas, you have no idea how much all of your input means to me. Thankyou. Also, you make some good & valid points for me to add into the complaints, and I will look into lunch/day clubs. Thanks again

Thank you.

I used to have an old lady lived across the road from me, and over time, as happens to many, many older people, she became much less able to get out and about. Before that, the place I used to see her most frequently, was at the bus stop, to go from the village to the nearest town.

When her life started closing in, she became noticeably withdrawn and down. Eventually, she used to go off, every Tuesday to the Age Concern Lunch Club/Day Centre from mid morning until late afternoon. Much of her old self came back, and of course the others there were both in her age group, and facing the same isolation issues.

Eventually, she asked her son to organise for her to view nursing homes as she felt life could be better again, and that's where she spent the last few years of her life, until she passed away, just a few weeks ago, at 97. Wonderful old girl - still had her mental acuity until the end.

Your thread made me think of her again, so thank you for that. Remembering her again made me smile.