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Carer for my mother but excluded from the treatment room

Posted By Rober555

"Carer for my mother but excluded from the treatment room"

About: Babington Hospital

(as a carer),

This is causing much distress and heartache. My mother is 91 years old. She is frail, with sight and hearing difficulties. She has a long standing leg ulcer that has responded well to iodoflex dressings.

I was attending wound clinic with her, 3 times a week, at Babington Hospital, Belper ( staffed by DCHST nurses). We’ve had a torrid time of it but mum is stoical, confused and quiet. It takes me 3 hours to ready her for an appointment and I don’t drive. I have a long-standing severe mental illness and have been hospitalised myself twice.

Earlier this month November, the nurse informed me that I could no longer go with mum into the treatment room. To be honest I felt hurt, flabbergasted and very concerned that mum wouldn’t know what was happening. Since then, it has got even more difficult. I still have to get mum to clinic and pay taxis. We can’t afford the expense and now the misery this is causing.

I do chatter and raise issues but I can be quiet and would shut up if told to do so. It was suggested that I had distracted the nurse such that a vital check on mum was missed. I have asked for the reasons for my exclusion to be made clear and gave an SAE to the nurse who had excluded me and spoke again to last Friday. No change, no further explanation and now utter chaos and confusion here.

On Monday, mum went alone to clinic. She came back unable to recall the nurse she’d seen and couldn’t say what had been done to her. I can see she is getting distressed again, which is why I gave the time to be with her for these appointments. I do feel let down having supported the excellent nurses who have cared for her over many years.

I think she’s in honey dressings. I had to object to silver, because it caused 2 visits to A and E and 6 boxes of antibiotics earlier this year. Was it because I challenged a nurses use of a dressing or was it my views and sounding off about the government that has put me here? I care about injustice, hate lies and love the NHS. I now feel broken by the stress and worry of the last 11 days.

My attempts to engage PET have seen them ask for evidence of my power of attorney for mum? Is this normal? This is my 20th year as her only carer and I thought it was obvious, with my presence at appointments and willingness to answer questions and reassure and support her there, that I was and still am? So, now it’s silence.

Yet, I still have to get her there. They don’t want to engage or deal with me, though I did get one innovation to stop other elderly patients being sent from wound clinic to A & E for 8-12 hours. I spoke to the practice manager of our surgery to ensure an on call doctor could be eyes and ears within one hour of a clinic appointment, with photographs sent and hopefully infection identified and antibiotics despatched. I think they need a carers panel but they don’t want suggestions from me apparently.

It’s all very soul destroying and difficult for mum who doesn’t understand why I’m not there with her anymore. I hope we can get changes from this but I don’t want to be a nuisance to anyone and will stay away to let them do their job. I just wish they realised the problems and the dangers they’ve created here. Also, lack of sleep and information has left me feeling used and confused too.

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Responses

Response from Derbyshire Community Health Services about a year and a half ago
Derbyshire Community Health Services

Submitted on 04/12/2023 at 13:40
Published on Care Opinion at 13:40

Hello,

Please accept our apologies for the delay in our response.

Thank you for your comments. I appreciate this has been a stressful and emotive time for you. As you are aware, we are communicating with you via email and we are working with your mother to ensure the best care possible, we of course value you as the main carer for your mother and our intention is to continue to work with you as before.

Thank you.

Update posted by Rober555 (a carer)

There simply is no communication going on! We have both been made very vulnerable and despondent by this. Last week we had another main hospital visit wasted because information hadn’t been passed on.

I am just very sad that our wonderful, beautiful, amazing NHS seems to have been reduced to a sham in clinic by poor communications, lack of management and not keeping up with what was previously arranged and agreed around appointments and responses.

To anyone reading this, I offer you hope that the NHS can be made better.

There are good people but for whatever the reasons, our current experience

Is not good and is not sustainable. I fear we have a long way still to go to get some very basic changes that could make all the difference. Thank you and I appreciate this opportunity to feedback and communicate even though it pains me to do so.

Update posted by Rober555 (a carer)

It would appear DCHST has a poor regard for Carers despite claiming to be Carer Aware. It is very disappointing that communications have stopped again.

Each clinic date I have to check if the hospital is open and functioning given it has a propensity to flood, which disables the lift and makes it difficult for mobility impaired patients to access wound clinic, blood tests and podiatry appointments.

I don’t know when wound dressings are likely to change again? I don’t know if honey will keep infection at bay or if my mother should be receiving antibiotics again?

I know swabs have been taken but no results are shared. I pass on envelopes from doctors to nurses and hope instructions are followed. I’m very aware this is an odd system

It feels that communication that could expose me to even more prejudice and stigma if the contents of such letters don’t meet with the approval of those who have already excluded me.

This feels bizarre and increasingly difficult to fathom.

Inevitably, we seem set to be wasting money getting to arranged appointments in 2024 that won’t have been prepped for, such that those in Dermatology and Vascular will be lacking the necessary information to respond in the most effective and caring ways. I hope we can avoid all the mishaps of 2023, but without effective, open and honest communications, I think I’d be a fool to just assume things will be ok?

I hope next year we might get a Carers Group together. We might be able to meet with the CEO? It is time the Board and senior leadership took an interest in just some of these issues which have made life so difficult, so brutal and so sleep deprived these last few weeks.

It would be fantastic If they would consider a Carers Panel. Fantastic if they recognised Carers as key stakeholders. We are a team. We save clinics massive amounts of money doing the heavy lifting, running virtual wards 24/7 from home, soothing and changing clothing for our loved ones in the middle of the night, keeping the washer going night and day and joining up the dots, such that the many other NHS elements are kept updated and made aware of changes.

If only unpaid Carers received just a little respect and acknowledgment that we save the NHS massive amounts of money each and every day. We do all we can and yet stigma and prejudice can still get us excluded. How is this fair? How is it acceptable in 2024?

It is causing massive problems, destroying relations and leaving a very bad impression of an NHS Community Healthcare Trust that in my experience has lost something fundamental, namely kindness and care! Maybe it’s still there? I just haven’t seen much of it lately and mum has had her life turned upside down in the chaos. It’s not good like this and it’s not sustainable either.

Thank you Care Opinion. You are an amazing collaboration of kind and informed people within and outside the NHS. We are all united in wanting a kinder, more responsive NHS that values each and every voice that is crying out for basic changes that make a massive impact.

I’m sure there are good people at all levels in the NHS willing and ready for change that is meaningful and long lasting. Change that is truly Carer Aware.

This isn’t about costly changes it is about care!

Thank you and best wishes for a future that works for the good of all Staff,

Patients, Carers and everyone who wants to see the NHS thrive.

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