More barriers by more services

As if there’s not enough services creating barriers, now the turn of the District Nursing Team.

My Mum was supposed to have her Vit B12 Injection a few weeks ago, as well as a Vit B12 Blood Test which the District Nurse Team Lead put down for both to happen on the same day by seperate Nurses, even though I stated it would be too much for her all on the same day.

What happened was one of the nurses phoned me 3 times prior to arriving at the specified time while I was on the way to my Mum’s house; I answered the phoned on the last occasion to inform her to tend to other patients on their rota as they were too early before the agreed time. When I arrived at my Mum’s house they were waiting near the front door despite it raining. They informed me they’d carry out both the administering the Vit B12 Injection and the Blood Test - which my Mum did refuse as was too much. They proceeded to inform me someone would be in touch about someone else coming to take the Blood Test, which didn’t happen so I ended up phoning the District Nursing Team myself.

When I did arrange a day/time, the Phlebotomist who was due to come out phoned me the day before stating it was her day off and proceeded to arrange for the day after; which was the agreed day anyway. I informed her that she was due out the day after and that I was puzzled she didn’t know the correct day. Seeing that they didn’t mind messing me about, I envisaged the same happening again even on the day she was to come out to my Mum’s house, so I cancelled altogether.

I have since tried to speak to the Team Lead and whoever is in charge of the District Nursing Team, to no avail.

So I phoned Patient Services instead of PALS (as they sided with the District Nursing Team in the past) and explained everything and that I need to speak to someone in charge of the District Nursing Team.

Another Team Lead phoned me. I explained everything, and that my Mum wants me there when the Nurses come over, only to be informed that as my Mum has Carers that they can go over when they are there. I had to repeat many times about the Nurse phoning me the day before where they informed me it was their day off; only to be told it was a ‘courtesy call’.

Neither my Mum or myself need this. Since when do District Nurses dictate, when the NHS Consitition is clear on family involvement?

If it was just the one nurse I would say it sounds like rota/staff efficiencies exercise but as it is two different people then it does not make sense to come on the same day if she is not fit enough for that.

They are out of order, they are not seeing the patient, blind to her and not working holistically.

As for saying they can go if a carer is there, that is out of order, logically maybe ok but if your mother wants you there then you should be there. Do you have a POA for her health and welfare? Would it cover this for that requirement?

I’ve seen some hospitals and/or health service areas have things like health passports, it is a simple form(s) saying the patients condition and needs - the requirements on that could be that she is frail and weak, feels pain and two procedures must be separate days, also that she needs you in attendance.
Considering the demands on the NHS they might not take kindly to that but if it is a requirement then you can but request it, no guarantee they will stick to it though. My mother has a sheet from the stroke clinic that lists her issues and how she can be helped. It is not always taken notice of.

Occasionally I have to remind professionals that my mother is frail and feels pain intensely now and finds it difficult to deal with and when I do that they are understanding, apologise and accept the situation and do their best to accommodate it.

I have emphasised that my Mum has Dementia and is very ill, and that she wants me in attendance when nurses come out. I have Power of Attorney, I also have a Mental Capacity Assessment carried out that clarifies my Mum wants me involved in her care.

Bottom line: even though they provide a ‘service’, they prefer to work alongside other professionals; pure discrimination.

I dread every contact with officials dealing with my son. No one wants to listen to me but expect me to fill in any gaps they leave in his arrangements! When anyone says “not my job” what they really mean is that they’ll leave it to me. They’ve arranged an annual review meeting at his flat next week, not inviting me, but I’ll turn up anyhow. He hates meetings, never met his new Care Manager or new advocate. His settee seat has collapsed, no one has done anything. So I hope the Care Manager sits there! I’ve repeatedly invited her to meet M here, so she can see the steam engines and he can tell her what work he does on them. Ignored.

What are CarersUK doing about the level of discrimination unpaid Carers are subjected to…?

Absolute arrogance.
It’s a nonsense, in all but official signed pieces of paper you are a professional - you get paid for caring, you have trained on the job and probably know a lot more than the paid carers about your mum and her conditions, -two different carers on different occasions didn’t realise/see my mother had a stroke, fortunately I was there and knew instantly.

They are completely out of order and flying in the face of care and duty of care etc with a dementia patient and the MCA.
Have you spoken with the care quality commission?
I’m feeling very lucky we have such good professionals here.

The CQC don’t want to know. I’ve been trying to find a pro bono solicitor as there are lots of human rights issues nevermind mismanagement that has gone on since 2012, cannot find anyone. Making me conclude once my Mum has gone so will I, I am forced to drag myself through life living in despair when I need my focus and energy supporting for my Mum.

If you have POA over Health and Wellbeing, they have no choice but to make sure you are there, especially if the best interests decision is also clear on that point.

They cannot say that “other people will do”. That would be a breach of the Mental Capacity Act. They know this. So I’m guessing that they’ve either decided you’re the problem (often happens with carers) or they’re assuming you don’t understand the law in this area.

Most likely, it’s the former. All I can suggest is that you make it absolutely clear that you are sticking to the Best Interests decision and expect the same of them, and ask for a face to face meeting to discuss and resolve the situation - preferably with a friend present as witness.

Good luck Butterflies

If you can’t have a fiend as witness, see if there is a local advocacy charity that can attend with you.

Advocacy isn’t what it used to be, in Hampshire.
Recently, my advocate said I didn’t need a Carers Assessment, what I needed was for M’s care to be arranged properly. So she has written to M’s new advocate to fill her in, so she can put my views forward at M’s review.
That’s next Friday, I’m not invited (but will go anyhow).
M is home with me this weekend.
I asked him if he knew there was a meeting at his flat next Friday? No. What’s a review"?
They haven’t even told him but arranged it at his flat.
Haven’t sent him any paperwork, which they should according to his plan.
He hasn’t even met his new advocate who is supposed to represent his wishes.
Did he want me there? Yes…

There’s no local advocacy services, only one commissioned by the local authority + CCG that have caused all the problems. Experience of advocacy support in the past has contributed to excerbating the situation; as my Mum’s advocate lied in a meeting that my Mum does not want me involved in her care. If I’d know all this palaver would have taken place, I would have checked with my Mum if she wants me in charge of everything when I sorted out Power of Attorney for Health/Welfare then things may have stood a chance of being different.

As to the MCA, I have carried out research and cannot find any reference where I have the right to be present at my Mum’s house; as there have been umpteem failings since 2012 and am exhausted. Have you any reference?


Lasting Power of Attorney comes directly out of the Mental Capacity Act, and therefore if they restrict your use of it, they are in breach of the law.

This from (with emphasis by me):
Health and welfare attorneys
As a health and welfare attorney, you make (or help the donor make) decisions about things like:

daily routine, for example washing, dressing and eating
medical care
where the donor lives

You might need to spend the donor’s money on things that maintain or improve their quality of life. This can include:

new clothes or hairdressing
decorating their home or room in a care home
paying for extra support so the donor can go out more, for example to visit friends or relatives or to go on holiday
You must ask for money from the person in charge of the donor’s funds.

Refusing or consenting to treatment
Check the lasting power of attorney (LPA) for instructions about refusing or consenting to treatment.
You’ll need to:

show the LPA to care staff
sign medical consent forms
make decisions in the donor’s best interests

You can’t do those things if they ignore you. Yet you have the say - but check the wording of the LPA first on health matters.

As far as I am aware there are no restrictions to my using the Power of Attorney I have for Health/Welfare, the restrictions have always been place by professionals involved where they have always prefered dealing with each other excluding me.

The upshot of everything is that the Phlebotomist who phoned me the day before they were booked to take my Mum’s blood test, it was decided between themselves my Mum be passed back to the GP Surgery, as in their words I ‘put the phone down’ (which has gone on my Mum’s record); when infact the conversation had naturally ended. The reason why there was a referral in the first place from the GP Survery, was due to the GP Surgery Nurse phoning me at the last minute to rearrange. I am expected to not only be perfect, but to bend over backwards like there’s no tomorrow. Since when has services become dictatorships? Such level of bureaucracy is playing with people’s lives.

I’ve found on many occasions that carers are treated well as long as they agree with everything. But some professionals hate to be questioned. And especially hate to be proven wrong. That’s when things get written up in a way that can’t be challenged because (of course) a professional “would never lie.” Except when you catch them out and can prove it. That’s the hard part.

In my work, I came across multiple examples of this.

That’s the key, Carers have had the backing of the Commissioning Team at the council so have avoided agreeing with things and treat me as the problem. Professionals have always been above ethics, as they don’t act ‘professionally’. The Care Agency Manager insists the Carers are reliable, responsible, trustworthy and honest; they’ve repeatedly lied about damaging/misusing my Mum’s property - the local authority instead of supporting me deal with this back them. There must be way of redress than having to go through faulty complaints proceedures that don’t resolve anything, things have been getting worse since 2012.