Trying to live at home with terminal cancer

Hello im not sure this is the correct forum so apologies if it is not

My mum is in a hospital urology ward with end stage kidney cancer. I would like to get her discharged home and she wants to go home (Not to a hospice)  . She lives in  house  rented from a social housing association provider . Since she went into hospital they decided to renovate the whole kitchen and 1st bedroom . They were initially asked to restart the boiler that wasnt working but they have decided that a whole new kitchen needs to be fitted ie new cupboards, walls , floor ,, boiler etc

The problem is that this is likely to take 2/3 months as they need to get quotes etc but the hospital are saying that she is not able to be discharged home as major renovations are needed in the property.   This is despite the fact that she would essentially be living in the 2nd bedroom and she wouldnt need to be cooking . The medical and nrsng care she is getting can be given at home

 

This just feels like the housing assocation are taking advantage of the fact she is dying to  make the property in a state for another tennant. Is there anyway i can get around this. The urology ward  staff are fine they  dont seem equipped for long term or palliative care  and im just amazed its the landlords comments that are preventing them putting  a package in for her to be cared at home . Is self discharge possible ? She is finding it hard to walk and i would appreciate the hospitals input into home care for her so i worry they wont provide this if she self discharges .  No one from the hospital wants to even come to view the property . Is there anywhere i can get advice on  this issue ?

 

thanks

  • This is a tough one and I think you need some specialist advice. Essentially, if the property is deemed not fit for human habitation then council could potentially impose ban on anyone living there. It's different when someone owns their own home, but landlords aren't allowed to let properties in certain state especially to vulnerable person. In such instances, they are normally required to find emergency alternative accomodation. Because your mother is not homeless on the street but has a bed somewhere I am not sure whether self-discharge could be counted as making herself intentionally homeless so I think you need to get advice firstly from Shelter but also I think Citizen's Advice and/or Age UK in order to help identify the best solution. If your mother is well enough to go into alternative Sheltered accomodation she might be able to get alternative temporary accomodation with planned discharge rather than self-discharge, but I appreciate such a move will be traumatic for her. Another option is of course a nursing home, but I can understand how that might be traumatic also. The key to this is, I feel, whether the state of her current rented home means it cannot be legally let, but if that is the case then no rent should be due for the period while your mother is not allowed back home. It may fall to you to help smooth a transition between hospital and wherever your mother is able to move to. It's a horrible situation to find yourself in and I hope you are able to get the answers you need and find somewhere more comfortable than hospital without causing your mother too much distress. The only other idea that came to mind is these DIY teams that transform homes over a weekend. Can the community rally round? However, the fact your mother doesn't own her own home so that major works need to be authorised may be an unfortunate spanner in the works. I do hope you are able to find a solution. Sorry I can't be more helpful. Really hope there's something I've missed. x

  • Contact her local MP, councillor and press - copy in the housing association who seem to be breaching her human rights. 
     

    Good luck!

    Dave

  • It is certainly possible to do all the things Dave recommends. However, I'd still suggest getting specialist advice first. This is because a complication could be if the tenant (your mother) had previously failed to report problems that needed fixing in a timely manner (leading to further deterioration and the need for extensive renovations now) as that could constitute a breach of the lease sufficient to end the tenancy. It sounds like an extremely difficult situation. Good luck and please do let us know how you get on in case any other forum users find themselves in similar difficulty.

    Thanks!

    Rose 

  • Thank you i feel that this is really the most practical route at this time point as time is of the essence. The hospital have contacted the housing association but as i say its not clear to me who at the hospital is  making the final decision to do nothing. It sounds as if its the hospital social worker.  as the nurses had previously contacted a macmillan nurse and as i say no consultant seems to be willing to take responsibility for her care and keeping us up to date. All she is getting is paracetamil and morphine

  • Thank you yes i will  get in touch with these charities, the queen died in balmoral which has over 100 rooms and several outbuildings. I wonder if all were in a good state or did they just focus on the room she was in. All im saying is why cant she go into the bedroom  she has been in. The housing association have known for years that the first bedroom needs fixed. They have came out several times to fix the boiler but have not been sucessful so their last resort is to rip out the whole kitchen assuming there is a leak somewhere.  The only alternative accomodation is hospice care which she and i have refused. She would rather be in her home of over 20 years. The association will do the work however they need to get quotes , authorise it, then get the workers contracted which may take a month and then the actual work they say is approv 2-3 weeks. Im not sure she has this much time, its been about a week and ive still not been told that they have a quote . As i say they plan on doing work to areas she will not use so its as if they are getting the property ready to let to the next tennant. A new kitchen is of no benefit to her as she isnt eating much solid food. In terms of heating there are enough electric heaters to heat the room and shower water is not provided by the boiler  im therefore not understanding the objection to discharge home from her medical perspective. Yes a lovely sparking home is nice but she is basically going to be in rooms they have no intention of working on at the moment

  • Hi - oh this is just so awful for your mother especially with the leak and other problems having been reported so many times. I can hear your scream and your frustration. It's justified. Yes, get your MP and local councillor involved. That and the press will be the only way to speed things up when you are otherwise dealing with public sector procedural matters. You could also write directly and urgently to the Housing Association CEO. However, if there were rot in the property resulting from a leak – am thinking dry rot specifically – then looking at things from the housing association's perspective they will (correctly) deem the work essential and the hospital will (probably correctly – but definitely worth checking this point with a specialist) refuse to discharge her if there are such major works. That leaves you only with self-discharge and again that's a point I'm not certain on here. Thinking this through aloud, worst-case scenario is Mum's back home and works on-going through-out house. If there is dust etc, could be considered risk to carers, so your mother would have no care potentially. Are you in a position to undertake all your Mum's care if required? The other risk is that once works get underway there could be a finding that your Mum's second bedroom also needs extensive work and everything will need to be tackled at once – association won't want two separate jobs. Hopefully, there's no rot but if there's a leak they can't find the suspicion must be there might be. Also, if there is suspicion re leak there could be suspicion regarding electrics which would also be risk to both your mother and carers. As long as your mother is of sound mind, she can accept certain risks as owner – am not sure what position is as tenant, however. I have a relative choosing to live in a somewhat delapidated property, which is okay for now as there are no carers going in, but would not be okay if carers were needed. This relative has refused to allow any contractors in – says can't cope with having people in house – and has also refused to stay with other family members while work (including to replace heating system – there is no hot water or laundry facilities) are undertaken. My relative is an owner not a tenant. If this is all off at a tangent, then many apologies. Am just trying to think of all the obstacles you might encounter, given where you want your mother to be. I really hope you are able to get an outcome that works for all. Once again, good luck!

  • I've been thinking again about your heart-breaking situation. Maybe it is just going to be so much work sorting things that you would be better focussing on spending time with your mother given her days are now limited. Hospices can be used for respite care. They can be more pleasant places than hospitals too. I really feel for you both. Sending you and your mother a virtual hug x

  • Hi

    If the housing association initially went in for a boiler and suddenly want to renew the kitchen unless there is a health and safety issue with the kitchen and bedroom she can surely refuse what is essentially simple replacement. Get your MP to write to the housing association ASAP requesting information if the works are essential and a danger to health and safety (if she was living there before going into hospital i would say they are not other than possibly the boiler) have the MP put in the letter she wishes to return immediately due to her failing health which they are preventing and can they please postpone all non essential works with immediate effect (your mum does mot need to be coping with workmen in and out whike she is so unwell) further have the MP insist they do the essential work such as get the boiler going and make the property available to the tenant whom they do have a contract with by way of the tenancy agreement. Don't write your self, get your MP straight on it as time is important here. 

    Very best of luck to you and your mum.

     

    Kindest

     

  • Hello thanks for all the messages. The mcmillan housing officer, hospital palliative care nurse and the housing provider had a discussion. The housing have said that  they will postpone the repairs and she can move back in if she wants so this is what will happen. Unfotunately she is getting to be less responsive. I dont know if this is because they switched her morphine from liquid to tablet or because they scanned her (not sure why they are scanning her if she only gets pain relief)

  • Thank you so much for updating us all. The outcome of the discussion between Mcmillan, palliative care nurse and housing provider seems sensible. Really sorry your mother is getting to be less responsive. Hope she is back home as she wishes soon as possible. So sorry you have had to deal with all this stress. I do hope your Mum is made comfortable and that you are able to spend some quality time with her. It is such a difficult time for you all. Take care x