Scottish Palliative Care Indicators

[Scally]

Scottish Palliative and end of life care Indicators are now available on the Healthcare Improvement Scotland website:

http://www.healthcareimprovementscotlan ... ators.aspx

The final indicators were developed following a 6-week consultation period with carers and other stakeholders.

[Eun]

I wrote to them but they have ignored the plight of the Muscular Dystrophy boys/men - they told me they weren't taking submissions from carers when they drew this up. Although they did take feedback from the Living and Dying Well conference in Stirling which we attended.

Eun

[Scally]

I hope you gave them a hard time! But I must admit, your son's situation would have me tied up in knots if I was responsible for these indicators: I don't envisage him as dying, rather I see him as an amazingly alive and worthwhile human being who just happens to carry a rather shorter, if unpredictable, lifespan than the rest of us. Am I wrong, and if so, how exactly? And PS: how is he, and what kind of support are you getting at the moment?

[Eun]

Hi Scally
I have had a think about how to answer your post. Rob does have "a terminal condition for which there is no treatment and no cure. It is usually fatal by the time they enter their late teens/early twenties" according to the Muscular Dystrophy blurb. Most of the boys die from a chest infection or from heart failure because obviously the heart is a muscle too.

We live with episodes of frequent heart palpitations where we wonder is this going to be the one which finishes him off whilst trying to stay very calm and unworried in appearance so as not to worry him and make the palpitations worse. We live where every cold he gets is not just a minor nuisance but can develop very rapidly into a life threatening situation.

He and we try to put these things to the backs of our minds and carry on as if everything was "normal" - whatever "normal" is lol. We are very lucky I know that he has lasted as long as he has and we feel very guilty at times that he is surviving where others with the same condition have not.

However him living longer brings its own sets of problems re the fact that there are no services out there for him and his cohorts. Again I know that Robert is lucky in that he has an outgoing nature which helps us all to cope.

Quite a number of his friends (including those younger than him) have simply given up on trying to have a life and barely leave their bedrooms. One won't allow anyone but his mother to work with him which puts a strain on his parents marriage and makes his dad feel very unwanted.

We as a family tend to work as a team. I am not saying its easy - boy do we have some doozys of rows at times (mainly re his majesty treating us worse than the care workers - e.g. letting them off with things he wouldn't let us off with which gets us very annoyed).

He also tends to forget that I have the same condition (although to a lesser extent) and he has no patience when I am unable to do what he wants the way he wants it - like holding his arm up a certain way so he can scratch his nose or something like that.

We actually had a big row just before last Saturday when Rob was going to the Kelvin Hall to play powered wheelchair football and we went on strike and refused to drive him to the football unless he agreed to start treating us a little bit like parents and a bit less like something under his shoe. (He wouldn't come off the computer when I asked him to come through for his dinner at the time I wanted. When I eventually detached him from his ventilator (and the computer) and brought him through to the kitchen I was getting my own dinner organised on to the plate (salad stuff, my Metformin etc) and he said to me "You should have done that earlier" I lost the rag and asked him who the hell he thought he was talking to - if I hadn't been arguing with him to come off the bliddy computer my dinner would have been organised!!!! We took him to the football and he agreed to try and think about us a bit more.

The only support we are currently getting is 2 hours in the morning to get him up, washed and dressed and into his powerchair. and 2 one hour showers twice a week. We do everything else.

He's going to Rachel House in June for a 4 night stay but they won't be providing respite for too much longer. There is also a visit of all the DMD young men to the Prince and Princess of Wales Hospice in Glasgow as they are looking into what they might be able to do. Rob is going to take all the information packs about Leuchie House to all his friends at this meeting and then they will go for a visit sometime in the summer - just for the day to see what it is like.

He got an email back from the SW re the application to Leuchie House for respite but the SW said they would not be willing to fund it fully - they might partially fund it with a Direct Payment. We would like them to fund for a break of 4 nights 4 times a year. I don't think that's too much to ask for considering we do the majority of his care the rest of the time - what do you think?

Eun

[marie66]

Hi Eun, depends just how much 'partially funding it?' means!
I think they've got a bl**dy cheek and should be funding it! I would definately push for it on a DP Eun - you both need a break too!
What about the old chestnut of a Carers Assessment? I know...I know! - but here they're trying to support this a bit better and offering some Carers DP assistance as part of the needs assessment. Might be an option to chasing some further funding for a wee time out?
We shouldn't need to chase funding should we!
Stay strong,
M x