Oh my Lord. . I'm absolutely speechless ... all I can think of is call Marie Currie. . They help terminal patients and their family's  .. you can get their number on their home page .. they do much more then i realised after looking on their web page .. then a back up of calling McMillan.. they have free legal advice .. and just maybe able to tell you where you stand legally ...  

Don't give up .. every day counts ... my heart goes out to you .. your already going through a nightmare .. they should all stop saying what they can't do ... and do something .. what a jobs worth you've come across ...  good luck ... sending you a vertual hug... please would love to know how that goes ..

Chrissie

What a nightmare situation. Kind of thinking out loud here,but what would happen if your daughter was classed as homeless? Not sure if the council would then be obliged to find her suitable accommodation. 

Does the hospital have a social worker who could have some input? 

Think about contacting your local MP if you have the energy. Wish I could come up with something to help.

Best wishes, gamechanger

Thank you for replying, we did ask what the options would be if she was classed as homeless and they just said social services would make a decision about where to place her and we would have no say in the decision. We have been told that the social worker from the hospital will be in touch to discuss things with us but we are waiting to hear from them. 

If they still come up with nothing , take a trip to your local paper ... bet they'd soon move then ...

Chrissie x

I'm so sorry to read about this awful situation.

My advice may seem a little harsh but it is based on years of experience dealing with social services because I have a son with a severe learning disability and recent experience through dealing with them because of family members with dementia.

First of all don't agree for her to be moved off the ward until suitable arrangements are in place. Please don't be emotionally blackmailed by them. If being declared homeless is a necessary step to getting the appropriate care arrangements in place, so be it. Legally your daughter is an adult and both the local authority and the NHS have legal obligations they must fulfill. Don't pretend or tell social services that you can cope if you can't or they will walk all over you and assume that you are able and willing to do their jobs for them. I have seen this happen all too often and everyone involved suffers including the family member with the health problem. If your daughter lacks the mental capacity to make her own decisions because of her condition or the side effects of her medication she is entitled to a best interests meeting under the Mental Capacity Act. 

Second - get some expert advice from someone like Citizens Advice. At the very least they will be able to signpost you to local third sector services or to local MacMillan services. I volunteer with a Disability Charity in my local area who provide free advice from people who know the system inside out. 

Thirdly - get your local MP and town/county councillor involved by asking for their help. Both local authorities and NHS services are accountable to local politicians. They need to be aware of who advised you that "if she was made homeless social services would make a decision about where to place her and we would have no say in the decision". This is pure scaremongering and tantamount to emotional blackmail. 

Finally - be prepared to threaten to go to the media if they try to brow beat you. "21 Year Old with Terminal Cancer made Homeless by Heartless Local Council and Hospital" makes the sort of headline councillors and NHS Chief Executives hate.

Apologies if this comes across as negative, this sort of scenario makes my blood boil. This situation is not your fault or your daughter's but typifies the damage done to our health and social care services over recent years. You have enough to deal with, without having to fight for your daughter to be treated with dignity and respect.

Best wishes
Dave

Hi Oddone, I wrote to you 2 yrs ago when you first posted and have often wondered how your daughter was doing. I am so sorry to hear you are all having such an awful time, you definitely need support from experienced care organisations. Please contact Marie Curie or McMillan as your first step, then be led by them. 

Is your daughter able to tell you what she wants ? 

I do hope this situation can be resolved quickly, I'm sure you want to be spending all you time with your precious daughter, not fighting bureaucracy in corridors. 

Denise

Hi Oddone,

I am equally appalled about this, as all of those who have already replied to you. Could you have a hospital bed downstairs, maybe in your living room and either let your daughter use a commode or use incontinence pads? We did this for my mother-in-law and had carers coming in to attend to her personal needs 4 times a day.

I know that this is not the ideal situation, but it meant that she could stay at home in the bosom of her family until the very end. We got a social worker to fight on her behalf. We saw her on the Friday and she had everything arranged by the Monday.

I do hope that you get this situation sorted soon. It is upsetting enough trying to deal with a terminal diagnosis, without having these additional worries. Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you for taking the time to reply, I genuinely appreciate it. We did feel pressured into just bringing her home as we had no idea what else to do. Reading your advice put things into perspective though, and I'm feeling a little more focused and ready to explore all the options and chase up people myself rather than just taking no for an answer. Thank you again. 

Thank you for replying unfortunately the only ground floor space we could use is the garage which would need conversion. We don't have the time or money for this and can't get a grant to help as she's "too ill" for it to be feasible yet she's not "ill enough" for hospice care. I have spoken to a palliative specialist this morning who is going to come and chat with us so hopefully we can find a solution. Thank you again for taking time to reply.