Palliative care, does it still exist?

[wheezyof]

I saw a consultant , for the first time since well before lockdown, on the 14th September.

I'd never met him before but he was really great. He'd obviously read my notes as he asked about all my conditions, osteoporosis, swollen legs etc.

He said my lung condition is now too far gone to put me through lung function tests. He changed me from 3 inhalers to just Trimbow. Said I should go on full time oxygen and was to be given palliative care.

After 2 weeks I chased my local GP's surgery to get the Trimbow.

The oxygen nurse came last week. I'm now hooked up to an oxygen concentrator when still and on oxygen when mobile.

Meanwhile the nurse in vascular surgery has got me Farrow wraps for my legs and I'm injecting myself daily for my bones.

All this is going well but nothing from the palliative care team. I was hoping someone would contact me as I could do with some advice.

I don't know how to contact the team so can't chase them up.

Any ideas ?

[CDPO16]

I'd go through your GP or contact the secretary of the consultant you saw. They are usually very helpful. Good luck xx

[Bevvy]

Why don’t you chase up palliative care via consultants secretary. There are still teams both in hospitals themselves or community teams which are usually attached to a hospice. From experience palliative care at the hospital usually refers into community teams. Certainly your gp can refer you and explain what to do. Palliative care is excellent. Their job is to ensure you are as fit and healthy now as possible. Too many people think of palliative care as associated with death when actually they also provide services and information to help keep you going for as long as possible. They offer things such as physio, counselling, OT services to ensure your home has any adaptations and equipment required. Information and benefit support. They can assist with pain control and will usually liaise with gp to ensure any medications that you need are prescribed promptly. They will visit you at home and even just be on the end of the phone for you. They really are a very positive and helpful organisation.

[LissacFrance]

Try contacting the NHS at this address:

nhs.uk/service-search/other...

This will open up a simple page asking where you are, so that they can direct you to a local number. Take care, Chris.

[SuziElley]

Definitely contact the hospital consultant’s secretary

[Izb1]

Sounds like you have gone through quite a time of it wheezyof but pleased to hear you have people looking after you. I think everybody's suggestion to contact the consultant secretary is your best option to chasing pallative care. Thinking of you and wishing you well x

[BronchyBronwen]

Absolutely agree about contacting hospital consultant's secretary. Shd be a faster route to action. Most hospitals should also have an End of Life CareTeam and End of Life Care Board with a Chair, clinical, nursing and other staff and patient representatives plus Complaints Procedure. Really worth looking into that as well, I suggest. Good luck! Thinking of you, and keep us posted. xxx🌷🌷🌷

[clematis5932]

I attend a Hospice under what is called palliative care. When I was recommended by my Consultive I was devastated thinking that it meant that I had not got long to live. Nowadays t does not mean that, if you are offered a place jump at it. My Hospice is wonderful we are treated like royalty. I go as a day patient having lunch there as well. Transport is arranged for me as well. We are offered relaxation classes, therapy of all sorts massages, gardening talks, the list goes on. the hospice will sort out any paperwork you may need completing, make sure you are receiving the right bbenefits, and will get results far quicker than you can. They will also make sure that you yourself feel safe and cared for. If needed you can have one to one therapy of any sort that will be private between you and them. Your GP can also contact the Hospice on your behalf. Good luck.