Me Vs Hospital/Social Services - Do I have any rights??

[littlelins]

Hi All,

I'm another newcomer hoping someone can give me some advice on dealing with communication problems between hospital staff and myself.

The background is that my dad (69) is in hospital and has been for 6 weeks following a seizure. He has now been diagnosed with Vascular Dementia. It has taken some prodding from me to get this diagnosis - they were reluctant initially to consider he had any problems beyond 'liking a drink'! This being because they think the seizure was related to him drinking too much which I now think is related to him having dementia and not realising how much he was drinking! Anyway, I digress. I have had a difficult relationship with the ward since day 1 - I have already spoken to them on 3 occasions to say I don't feel they are communicating as much as they should with me and have spoken to PALS. I thought I'd reached a point where they were telling me everything I needed to know. Wrong...

During Friday's visit, the doctor happened to stop by and say at the MDT meeting the previous day dad had agreed to respite...WHAT MDT MEETING???!! Which brings me to my current problem - do I have a right to be involved in these meetings regarding my dad's care? And if so, who do you think is the best person to give hell to now to ensure they involve me in future?! My understanding is my dad doesn't have capacity to make decisions himself - surely Social Services don't have more of a right than me to make decisions on his behalf? To clarify, I do agree with the decision made this time - for dad to be transferred to an EMI unit for 6 weeks initially - but feel as they haven't involved me in arriving at this decision, they aren't going to involve me in deciding where he goes.

Advice would be hugely appreciated

 

[jude1950]

hi littlelins.

Welcome to TP. You do not say in your post if there is anyone else involved in your dad's care for example is your mum still alive?... sorry if the question seems rather personal but I am just trying to get more of an insight as to your circumstances.

If your dad is thought to be capable of making his own decisions you would perhaps be better getting an enduring power of attourney drawn up . As his legal attourney you would then have the right to be consulted in all matters concerning your father.

regards

Jude

 

[Skye]

Hi littlelins

I think Jude's right, the point is, are you your dad's primary carer? If so, you have the right to be present at any meetings, and you should inform them in writing that you wish to be notified of any further meetings.

That being said, you say you agree with the decision to transfer you dad. In that case, SS have to be involved, as they will be taking over the care (and funding?)

You need to get in touch with your dad's social worker. Tell him/her also that you want to be involved in any decisions, and ask what the current situation is. If your dad requires funding, that deciaion will have to go before a funding panel.

Say also that you want to have some input into where he goes, and in the meantime do some visiting yourself, so that you have some ideas in mind.

Jude's also right that if there isn't an EPA in force, you should see to this as soon as possible.

Good luck,

 

[jenniferpa]

Hi and welcome to Talking Point.

Although you should have been consulted, it is possible you are in a Catch 22 situation. If your father is not deeply in the throes of dementia, it is possible that the hospital considers him competent to make this decision for himself, just as he would have done before dementia hit. Mind you, if that is the case, he will probably be competent enough to make a Lasting Power of Attorney (which has superseded the old EPA). The other possibility is that the Mental Capacity Act does give the option under certain circumstances for a professional to make decisions without reference to anyone else if it's in someone's best interest. They are supposed to consult family members if possible but..

I do think you need to notify people in writing - I'm afraid that continuity of care is not what it might be in some hospitals.

 

[littlelins]

Thanks for your responses and apologies for my delayed response. I'm sure you'll all understand how it is when I explain as well as worries about my dad taking over my life, work and kids also get in the way of finding time to reply

Jude - mum is long gone. Dad does have 2 sisters, but they live away and aren't remotely interested in getting involved.

Bless my dad - I don't think he is capable of making decisions for himself, but thank goodness I did draw up an EPA last summer. Excuse my ignorance, but I didn't realise it covered his personal welfare - I just set it up so I could help him with his finances if/when he wasn't capable. I haven't registered it yet though I realise the time is probably right now. I feel like to register it would be acceptance and I kind of like being in denial..

To bring you up to date - the social worker is very elusive! I lost my rag last night when my dad phoned me agitated at 10.35pm (maybe not late to you guys, but I'm up for work early, so I was just dozing off in bed). This is a new phase - he'd phoned the day before, but at the more reasonable hour of 5.30pm! He cannot phone without the assistance of the ward staff as he cannot remember my phone number, so I was furious they'd let him call me so late with no explanation on their part - just him on the phone 'I'm angry, I want to go home, where am I?' Aarrgghh.

So, having failed to get much reponse from SS, I have today contacted PALS to complain first and foremost about the lack of communication, and then with the 'please don't let him call me so late' as an add on. Heard nothing - no response, explanation, nothing - and I have been on the ward this afternoon.

I despair! Try to stay upbeat & try not to let it stress me out, but they don't make anything easy do they??

Anyway, rant over. Can I just say TP is wonderful and you are all such an inspiration to me - you make me believe I will get through this sanity intact...

 

[ishard]

Dear littlins NICE guidlines state that you, as carer, have to be informed and involved of any decisions made even if you havnt got the EPA/LPA registered.

I do suggest you remind them of this in writing and CC it to all the people involved in your dads care.

 

[sue38]

Hi littlelins,

The old fashioned EPA in England doesn't cover personal welfare, just financial matters. You may find that the medics will take notice that you have an EPA as evidence that you are the person that your Dad trusted to deal with his financial matters and therefore someone who should be consulted about personal welfare matters. I think sometimes the medics are just as confused about the legal implications of the various Powers of Attorney as the rest of us.

The lack of communication is the most frustrating thing in hospitals. I would write down my concerns and the questions you have about your Dad's care, hand it as a formal letter to the doctor in charge of your Dad and copy it to PALS and the GP. Make sure you indicate on the letter to the doctor that you have passed copies to PALS and the GP. This worked for us. Good luck.

 

[TinaT]

It is quite astonishing how this kind of 'exclusion from the loop' happens, especially in something so important as where your father will be living in the future. I would suggest that if he is being moved to a specialist EMI unit, it is obvious that he cannot make his own decisions and you would, as his main carer, have to be consulted. As previously suggested, I would also be visiting every EMI unit in the area and checking out what facilities and care they give.

As to the phoning late, ask the ward manager to put on Dad's notes that you cannot receive phone calls after a certain time. Not promising that this will work but at least you will have it in writing, and, therefore good cause to complain if it happens again.

xxTinaT