Meeting my Palliative Care Team

[MMG]

Is that correct if your under a hospice, care packages if needed are free without being means tested.

I think the criteria is having a DS1500 not being on a palliative care pathway.

[Hairbsb]

Just a reality check and that has made me very sad this evening

[Piglet]

Hairbsb no need to apologise or guilty. You’ve every right to express your feelings xx

[Hairbsb]

Need to stop thinking of myself right now. Sorry to all for being so flipping selfish in my words. Never been good at holding in emotions. All or nothing x

[Hairbsb]

Doug Carpenter feel guilty for being so selfish. Apologies x and I will grab the hug forthwith and run away with it haha

[Doug Carpenter]

Hugs are not just for mornings.

You need one now!

Herewith ...

Doug

[Hairbsb]

Piglet my son just sent me a pic as he is at a vegan restaurant and until I get a firm diagnosis from the head honcho neuro we have decided not to tell my son or my daughter. This has tipped me over the edge this evening x. I am not being positive this evening it just comes in waves and Christ this one is a tsunami.

[Piglet]

Hairbsb try not to let it overwhelm you. I hope you won’t need too much help as yet. We’ve been fortunate that my husband has been relatively stable till this last year.xx

[Piglet]

My husband has recently been referred for day respite but they are not providing this at present. So that is the only connection that we have at present.

[Piglet]

Is that correct if your under a hospice, care packages if needed are free without being means tested.

[Hairbsb]

I'm scared right now . Alot to take in x

[LindaB]

WheelsOfSteel I think (hope)you'll be surprised how well the meeting will go.

The hospice nurse who I have the most contact with is like a breath of fresh air. Nothing is too much trouble...however she also never pushes her point of view...ever. My views are 100% respected.

She is also a great link to my GP...she contacts them on my behalf and whatever I need appears!!

My personal view is hospice care is about keeping us (those with life limiting conditions) as well as possible in our own home & when eventually the time comes to check out they'll be there too. Wherever we decide that will be.

Useful to record how you feel now and then how you feel after your meeting👍🏻🤗

[MMG]

Hi almost worth noting that our hospice arranged a DS1500 form very early on which has its benefits.

It fast tracks access to PIP, ESA and a blue badge, but also means that social services care packages are free rather than requiring means testing. Dont know if the latter is local authority specific, but takes one problem away. Alas doesn't help with dreaded modifications.

Our hospice team are really good at coordinating care and highlighting that my husband is a priority. Even before needs increased. Our experience is that they are like a comforting hug right when you need them well before health needs are great.

We wouldn't be without them and in the early post diagnosis phase they were invaluable in answering questions about "the end" and advising on how in control you can be when the time comes. It certainly took a lot of fear away so that he can live a quality life while he still can.

[Lcfcno1fan]

I remember feeling exactly the same the first time I had the discussion about the future. Afterwards I felt so much better having discussed these things with people that are there to care and help you. Good luck 🤞

[Ellie]

WheelsOfSteel "Palliative care is an approach that improves the quality of life of people facing the problems associated with life-limiting illness and supports their families."

Eddie, why don't you go along to the meeting, see what they have to say, then you can have as little, or as much involvement with them as you want.

It's normal to be introduced to your local palliative team when you've an MND, even though we often feel like frauds in using their services 😏

And they can come up trumps on recommending meds or sourcing that elusive piece of equipment when other HCPs have an 'computer says no' attitude! xx