Firstly, thank you all so much for welcoming me into this wonderful community, after my first post, when we had just received my Mums new diagnosis of MSA-P and I was in complete shock.
Mum is now out of hospital and we have been discussing the principles of next steps and what she does and doesn’t want to happen in the future.
The problem is I have never been through anything like this before so I have absolutely no idea how to set up a living will/DNR or anything else that would facilitate her wishes. We also only have POA for finances but not health, should we set one up for health? I am not sure what this really allows me to do in practice!
I am sure there must be someone I can talk to about these practicalities but I don’t know who this would be, is there someone at the MSA Trust who specialises in this? My Mum became very upset with the Parkinson’s Nurses when they reduced her co-ben medication, that I think they have now written us off. For example, in the meeting to advice of next steps from hospital point of view following diagnosis they and the hospital staff mentioned completing a Hospital Passport for Mum but then when we asked the Ward to complete they said this wasn’t for MSA sufferers! Therefore, think this may also be outside of their remit?
Any help and advice on who to contact but also what can be included in these types of documents would be very much appreciated.
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Purplestar2
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Hi, and both sorry and glad you've found us.You'll find lots of helpful experience from carers and sufferers alike on here along with MSA trust who I would recommend you talk to immediately and can guide you through a lot of what you need to do.
We always say plan for the worst and hope for the best. MSA you will find is not known about much because of its rarity
Yes get a POA for health as this will allow you to make decisions on her health care if she can't.
Also look at a respect form which is a new form of DNR.
Talk MSA trust about benefits and care plans as MSA suffered will need lots of care eventually.
Hi, I'm sorry you're experiencing this. I second the advice on getting a health POA. I've had to do this for my friend. We've had frank discussions on her wishes as this disease progresses so I can put in place what she wants. The MSA trust has wonderful nurses for you to talk with. Does your mum have a neurologist? And do you have have a support network for you ?
With my friend, because of the rarity of this disease, I found I had to fight and battle for everything my friend needed, it was exhausting! I was advised from this site to get a hospice involved in her care and they have been absolutely amazing and helped so much. I hope this helps. Best of wishes to you and your mum x
Hi, sorry to hear about your mum and yes it's a real struggle to get any help sometimes..My husband has MSA p and c , postural hypotension and now dementia .
A good solicitor will do a home visit to set up a health and finance POA , ours did them both at same time as a matter of course, she also did the living will at the same time, all done in our home.
Your GP should also do a home visit to set up a DNR for you and they should also be given copies of your POA and living will. Also make sure GP knows (I'm assuming) you are your mum's carer.
Also get a carers assessment and one for your mum also. This can help with placements in daycare etc and also carers to come in to help in the home.
We are struggling through another infection at the minute, trying to keep him out of hospital as he doesn't do well there.
Obviously, there are many excellent safeguards behind health and welfare LPA and DNAR and Respect forms. However, can I just suggest some caution too. Include too much detail and you may find you are legally bound into unintended and horrendous situations. My husband's palliative care team helped him complete the Respect form (broader than the DNAR). However, when my husband was dying and in pain and distress (won't go into details), we called 999 and the first responder said the Respect form prevented him from doing anything to alleviate his suffering, as it would classify as life saving treatment. Fortunately, his boss arrived shortly afterwards and did what was required, relieving enough of my husband's symptoms so that he could drift again.
What I learnt from this, is be extremely careful what is requested. It can be misinterpreted and applied with devastating consequences.
A Lasting Power of Attorney (LPA) will allow you to make any decisions about health and welfare unless stated otherwise in the LPA. Although I had/still have fairly fixed ideas about what I want to happen to me I decided to not specify anything in the LPA and leave it up to the attorneys. this is because the LPA is a legal document so if I change my mind about anything specified I would have to re do it. there's currently about a 20 week delay for processing LPAs. I keep my attorneys informed of my wishes by email which provides evidence if needed.
You can DIY an LPA online with the government website, cost £82 I had quote from a solicitor of £400.Did it online over a long weekend then an hour or 2 later on doing signatures and witnesses on the paper document About 5000% easier than claiming PIP.
Talking of PIP, if you get it, then at some time in the future the hospice may suggest they do the SR1 form which is a "Special Rules" application when a Dr or Consultant thinks the person with MSA has less than 12 months left. This gets PIP quickly bumped up to the maximum and paid weekly, may also be backdated a bit. Useful if PIP not already at max.
Do ask if you want more info on anything I mentioned, I've had a long and interesting journey since first diagnosis 26/5/22 !
Hi - I'd agree with other advice already given. Just for info - in Scotland PIP is now called adult disability payment and eligibility is for those under state pension age and born after April 1948. TC not eligible but he gets higher rate of attendance allowance. I have both health and financial power of attorney - think in Scotland they're now combined. We've just been through process of doing an "anticipatory care plan" - this means TC's wishes about what happens is written down and available to medical staff. This can be changed - not set in stone. Parkinsons nurse and hospice nurse took us through this. Very difficult process but think it helped to have things both verbalise and formalised. DNR has been put in place through this process. Hospice nurse visits every couple of weeks - this has been really useful re monitoring/changing medication as necessary - she also gets immediate access to our GP which means everything happens quicker. This is a horrible disease and process just have to try to make things as easy and comfortable as possible for TC.
whilst my husband was in hospital, I had a carers passport which gave me access to the ward whenever I wanted or needed to be there. It meant I was able to feed him and make sure that at least he ate one good meal a day because he couldn’t feed himself. My input was welcomed with open arms because it was another pair of hands helping him. It was when he got the MSA diagnosis that I got the Passport. It shouldn’t matter what the diagnosis is, it is to help the patient.
I had Powers of Attorney for both health and finance. For health it means that if your mother is unable to make a decision about treatment because she is too unwell and is unable to make the decision, you can make a decision that is in her best interests and in line with what you know her wishes would be.
We also had in place a DNR which was drawn up initially by the consultant in the hospital and then reviewed regularly.
Finally, we had an Emergency Health Care Plan in place which states what the patient’s wishes are in different circumstances. This was drawn by the Community Matron in the District nurse team. Alan was adamant he would not go into hospital under any circumstances and this was clearly stated with certain exceptions e.g. if he broke a limb and it needed treatment. He did agree to access hospice care if required. It was so reassuring to have these documents in place and I had them constantly available when any medical person visited.
These are the rights of the patient and you have every right to request them.
Yes i am based in England but it is worth trying to get some equivalent documentation . It gave both myself and my husband comfort to know that these measures were in place to ensure his wishes were met.
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