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District nurses saying my dad doesn't fit criteria for hospital bed at home (long)

(24 Posts)
LadderToTheMoon Sat 01-Nov-14 11:59:45

Please can someone help me understand why the district nurses are saying my dad doesn't meet the criteria for a hospital bed at home?

My dad was diagnosed with advanced prostate cancer three years ago. He responded well to hormone treatment until this summer when he started to deteriorate.

He was admitted to hospital 4 weeks ago as he was severely dehydrated and had gone into urine retention. He was catheterised and put on saline drip to stabilise him. Shortly after being admitted he was diagnosed with metastatic spinal cord compression which was treated with daily radiotherapy. He has also had several blood transfusions, is currently on oxygen, has greatly reduced mobility (a few days ago he was able to get off the bed with help and shuffle a few steps but his mobility varies day to day). He needs help at times to feed himself. He got bed sores recently. The matron personally apologised to mum & dad about this. His levels of opiate-based pain relief are so high he slipped into a drug-induced coma a few days ago. A doctor gave him an antidote. In spite of all this his consultant said he needs to get home and try to enjoy the time he's got left in his familiar surroundings with family. We don't know how long he has. The consultant said it is about quality not quantity.

The hospital staff say he can go home but needs a hospital bed. The district nurses should be organising this. But the DNs are saying that he doesn't fit their criteria. I have no idea what is going on. When I spoke to the DN yesterday to try to get to the bottom of things she was going on about personal healthcare budget (which as far as I know my dad doesn't have one of these). There is also an issue with him being in hospital in one London borough, but he lives in the neighbouring borough. Even though it comes under one Trust things are organised differently in my dad's borough.

The DN is offering an air mattress to go on top of an ordinary divan bed which we just don't think is a suitable option (the hospital staff also say it is a poor substitute). The DN's response is that the hosptial staff don't understand what high quality equipment the DN's can provide. The DN is saying that my dad can start with the air mattress and then be assessed to see if he needs a hospital bed. But the hospital (occupational therapists/physio) have already assessed his needs.

I wrote to my dad's local MP yesterday and the parliamentary assistant is looking into things for me, but I doubt if anything will move forward over the weekend. In the meantime I wondered if anyone has been in this situation and why are we being told that a man with terminal cancer nearing the end of his life can't have a hospital bed so he can get home?

juliascurr Sat 01-Nov-14 12:07:14

contact www.macmillan.org.uk/Home.aspx

your story is familiar to me as a MS sufferer - no suitable services or equpment ever available
the charities might be better

enjoy your time together as much as you can
he knows you love him

juliascurr Sat 01-Nov-14 12:09:27

www.redcross.org.uk/en/What-we-do/Health-and-social-care/Independent-living/Services-for-people-with-disabilities/Community-equipment-service

LadderToTheMoon Sat 01-Nov-14 15:16:49

Thank you julia and I'm very sorry that you've also experienced the lack of services and equipment.

I get the impression that hospital beds are available, it's just that the DNs say that my dad doesn't currently meet the criteria to have one. The DN told me yesterday that if he had the air mattress on the divan but it was decided it wasn't suitable a hospital bed could be delivered the same day.

When I write that down it sounds rather churlish on our part and why don't we just get him home with the air mattress on the divan. But the hospital say he needs a proper hospital bed. The cancer is in his ribs and they are concerned about him laying flat. He can't easily move himself into a sitting position.

Also my mum needed help to dismantle and move the divan to create space for the hospital bed. She'd need help to get it set up again and then help to dismantle/move it if a hospital bed is delivered. And I've no idea where my dad will go when the changeover of beds is taking place given he has very limited mobility.

Both myself and another sibling live 90 minutes away from my parents, so not easily on hand to help shift things around at short notice.

TimeForMeAndDD Sat 01-Nov-14 17:14:58

Hi LadderToTheMoon I'm sorry to hear about your dad and the problems you are having getting him the right equipment. Does your dad have a social worker? If not, ask the hospital if he can be assigned one. He should really be assessed for everything he needs before he leaves the hospital, with everything in place before he gets home.

LadderToTheMoon Sat 01-Nov-14 20:04:33

Thanks TimeForMeAndDD. No, I don't think he has a social worker. But I think social services were meant to be assessing the set-up at home. So much is happening its hard to keep track of everything.

Bluesummer20 Sat 01-Nov-14 20:14:07

Sorry to hear that your Dad is so poorly. Where I work there is a discharge liaison officer who can communicate between hospital and community staff, also they arrange multi disciplinary meetings that the district nurses, physio, ot etc attends, ask them to arrange this. Your dad has pressure sores which would definitely make him eligible for a bed. From my experience when a patient is so poorly equipment can be obtained quickly and care organised within say 48hours. All the best

LadderToTheMoon Sat 01-Nov-14 21:00:26

Thanks Bluesummer. The district nurse mentioned a discharge liaison officer on Friday. Mum is going to track this person down. Interesting that he should definitely be eligible for a bed due to his sores. The ward sister is just as excaberated by the district nurse's attitude as we are.

Hatgirl Sat 01-Nov-14 21:08:26

Please can you check that he has been assessed for fully funded continuing healthcare before he leaves hospital.

If he hasn't been screened for it insist on it and request that someone from the district nursing team also attends. Don't let them discharge him until its been done. This will bring together all the professionals.

Bluesummer20 Sat 01-Nov-14 21:09:53

Also the palliative care nurses both in the hospital and in the community should be involved and probably the best people to be able to get hold of the bed. I feel so sorry for you having to worry and sort this out yourself

BelleateSebastian Sat 01-Nov-14 21:24:28

I'm sorry to hear about your Dad thanks

you can hire hospital beds if finances aren't an issue, don't bank on continuing healthcare funding its notoriously hard to secure sad

do you have a Macmillan nurse? they usually know which strungs to pull to access equipment to enable Palliative care to be delivered at home.

LadderToTheMoon Sat 01-Nov-14 22:08:26

Thank you for your further messages. I'm off to bed now as have a long day tomorrow to visit dad. I'll look into your suggestions. thanks

TeaandHobnobs Sat 22-Nov-14 15:43:57

Ladder I'm so sorry you and your family are going through this. Have you had any success since you last posted?
I just wanted to add that pursuing through the Macmillan route is a good idea - when my dad was diagnosed (almost identical condition - advanced prostate cancer, metastatic spinal cord compression), his Macmillan care is done by our local hospice, and they have been amazing in getting the necessary care and arrangements in place (social services were utter crap).

CookieMonsterCrumbs Sun 23-Nov-14 15:36:51

Where i work the OT would not allow him to be discharged and would ensure the correct equipment is in place before discharge. Ie they would order the equipment. That's working across 2 counties too so similar situation to you being in a different borough.

Is he known to the palliative care team? Get them on your side and they will push for it on your behalf too. I'm sure he qualifies (the nurses can buy or rent them depending on length of need) so keep pushing.

CookieMonsterCrumbs Sun 23-Nov-14 15:37:56

PS I hadn't rtft but see others agree with me

VivaLeBeaver Sun 23-Nov-14 15:41:55

Can you contact the hospital PALs team to see if they can push for it as well?

BelleateSebastian Sun 23-Nov-14 15:49:31

Bear in mind this thread is a few weeks old and the op's father was very poorly at the beginning of the month.

I hope you managed to get/or have got the equipment you need Ladder

Staywithme Sun 23-Nov-14 16:12:20

I'm so sorry your poor dad is going through this and also sympathise with the distress this is causing your family. You need to get in touch with the palliative care team as they tend to 'fight' much more for their patients and tend to get things done. Do not let the hospital discharge your father without a hospital bed in place as it's easier to get things done when equipment and care is being ordered to facilitate a return from hospital. If the hospital can't move him on then they will put more pressure on the community care team.

My husband has incurable prostate cancer and it has spread to almost every bone. He was rushed to hospital, four weeks ago, with an infection and it was discovered that he was suffering from 'malabsorption toxicity' as he was constipated. Quite frankly the ward he was on was horrific as the staff were unused to dealing with a cancer patient. I phoned his consultant's secretary, in tears, begging for him to be moved to somewhere more appropriate. He was not in his usual hospital.

MacMillan arranged to have him moved to their unit, which was on the same grounds. They helped sort out his meds to help with his pain and constipation. This is not 'ordinary' constipation, as we thought his bowels were moving, but obviously they weren't moving well enough. He feels better than he has for months.

While in there, they arranged for him to have an OT, physiotherapist, social worker, community nurses, benefit advisor. As a result he got a bed, bath equipment, wheelchair, rollator sp?, grip rails inside and put. This was done to facilitate his discharge. We've also been accepted to receive a new heating system (our heating broke down beyond repair when he was in MaCMillan) and benefits that we were unaware we were entitled to. Your father would also be entitled to a small grant from MacMillan. They will ask what it is for and our benefit advisor told us to say clothes and help with heating bills.

Hospices are not just there for 'end of life' situations but also to help ensure he is on the correct meds for his illness and he and your mother is getting the correct financial and practical help. It's a world away from feeling like a hospital, more like a hotel and family can stay over in the one my husband was in.

Sorry that was so long but I just want you to know help is available if you know where to look. Good luck and please let us know how you get on. flowers

Staywithme Sun 23-Nov-14 16:13:50

Oh cobblers, I hadn't realised how old the thread was. I really hope you got the help needed OP.

BelleateSebastian Sun 23-Nov-14 18:20:11

Staywithme sounds like you're having a pretty shit time too sad

Staywithme Sun 23-Nov-14 18:31:40

It's not as bad as it has been this last few months belleateSebatian. Don't get me wrong it is shit but Macmillan were fantastic with my husband and his pain has more or less become manageable for the first time in months, though he did fall last night as soon as I left the room. Typical. Good job we've both got a sense of black humour. I just keep putting one foot in front of the other because if I stand still too long I start thinking and that's when the crying starts.

Your comment suggests you're going through a rough time too.

BelleateSebastian Sun 23-Nov-14 20:13:29

People always say how brave you are but whats the choice? keep outting one foot in front if the other wink

My comments are more from a professional perspective, I used to work alongside the Macmillan palliative care team although i gave had lots if personal experience sadly smile

TeaandHobnobs Mon 24-Nov-14 13:29:06

Oh no sad I wish I had clicked on Ladder's name before I posted - I see from another thread that her father sadly passed away about 2 weeks ago sad

If you see this Ladder, I am so sorry, and I hope you are doing ok thanks

JaneAHersey Tue 25-Nov-14 12:51:53

The district nurse is following procedure only and not taking into account your dad's circumstances. My son who is an associate medical professional had a patient with the same problem and he pushed and insisted that a hospital bed was supplied.

Please push for this regardless. Be as determined to get a bed as they are not to provide one.

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