Happy Birthday MCA: my life with the MCA

Featured article - 02 October 2017
Lorraine Currie, MCA and DoLS Manager at Shropshire Council and carer

This week we have celebrated the tenth anniversary of the MCA and once again I have celebrated my daughter’s survival. This week also marked 7 years since the accident that left her with a significant traumatic brain injury, the week that took my professional life – I’m a local authority MCA lead - and made it personal.

I am a better practitioner because of her.

As I sat down to reflect on the MCA my daughter wasn’t at home. She was at Fresher’s week - 6 years later than scheduled, but she is there

So on the 27th September, as we all celebrated the MCA birthday, in my family we also shed a tear. As we celebrated Grace’s achievement and rejoiced at what she has overcome, we spent a short time grieving, again, for what would have been.

Many people have read on social media that Grace is at Fresher’s week and assumed she is all back to “normal” now, but that isn’t the case and we have walked a difficult path one called “same but different.”

A challenging journey

The journey to Fresher’s week has been incredibly challenging. I can assure you, from our experience, that for the most part a cognitive difference is hard to cater for, a brain injury is misunderstood and academia is not alone in being unable to think outside the box.

For the last two years, with a lot of support, Grace has successfully completed both the HNC and HND in photography. Technically this allowed her to join the third year of a degree course to top up. But, at this point, her difference had to be taken into account. After many hours researching universities, followed by a couple of unsuccessful visits, I honed my investigation to one sentence: “Do you insist on a written dissertation as the final assessment?” If the answer was “Yes” that ended the process. We have suffered the helpful suggestions “You could use a voice recorder” “Have you heard of speech to text software” and the well-meaning support “You can just write 500 words a week.” We have attempted to explain the severity of totally having no idea of letter shapes at all, of written language being completely inaccessible, and a memory which is so poor it can’t remember the beginning a spoken sentence when it arrives at the end.

For my daughter to write the word CAT she will first have to ask what does a C look like? I’ll describe it. If she can’t recall it, then I’ll make the shape with my hands and so on. This will happen every time she writes a letter C even if she wrote CAT ten times. This has to happen for every single letter, every single time. It is a very severe form of dyslexia known as alexia. It is slowly improving (after 7 years she can write her name mostly without a prompt.)

As well-meaning as the offers are, it would probably take the rest of my life, if not hers too, to write 500 words.

At last we found a university which would think outside the box. They say they are willing to consider something “of equivalence” to the written dissertation. None of us know yet what that will be, but I am sure it will be wonderful.

But of course that’s not the end of the battle. The next is with Student Finance England, who provide support for students with disabilities. But they, too, tend to think in such a stereotyped way about disabilities. For example, their initial offer of support to Grace was a manual note taker. I explained that this is like giving a visually impaired person a map and expecting them to find the campus: Grace cannot read back the notes that the note taker has written.

On her previous course, we created a colour coded system with a support worker who acts as her memory, reminding and revisiting everything she has heard in the taught sessions, and it has worked. We need this again, and for the next three years. So watch this space. We do, though, have a wonderful evacuation plan in the event of a fire, so I am grateful for small mercies.

Does the MCA help?

So does the MCA offer Grace anything here? Is it even relevant? Yes. It is relevant, and it can help Grace: and it should go further. The key is, supported decision making in practice. It means giving all the support the person needs so that their deficits are minimised and their strengths are maximised: this is so that they get the chance to do what you or I get the chance to do.

I don’t want to see a parallel second class world for the intellectually challenged. I want a world where Grace is an equal albeit a differently equal person. We need to all be brave enough to use only the first two guiding principles of the MCA, and do it so well that we csn hope we never need the rest.

We were visited recently by a Court of Protection visitor, since we are appointed to act as Health and Welfare Deputies for Grace. I said that I did not believe we had used the powers at all in the first 12 months. I said this because all decisions had been made collaboratively with Grace. I expect that the buying of a house will be put down as a decision we made, simply because it’s a big one. But in practice Grace was capable of making this decision when she had the right support, and was given the right information, to ensure she understood the salient points.

Yes, she has asked for me to do certain things (because they are boring); yes, she needs help with any written information. But isn’t that support to make the decision? In the matter of a house purchase, without a mortgage I think there is very little to understand really. Can I afford it? That’s pretty much it, isn’t it?

The Court experts recommended a bungalow: not on your life, says Grace - “that’s what my granddad lives in!” So instead she has bought a house where she can live downstairs and her PA can stay upstairs.

Her wishes and feelings are paramount and she can express them. Sometimes you need to look past her first answer due to impulsivity, and sometimes it is a bit like the old Little Britain sketch “I want that one…” (for anyone who remembers that). This doesn’t mean we take over her decision making. It just means we remind her that she might change her mind later, and some things are a bit too big to do that with, so she needs to take time, and think, and be certain. When the visitor arrived, he explained to Grace about Deputyship, and asked did she know what it meant for her mum and dad to have that role. She said, “they’re my contingency plan”. A pretty good answer, and I am happy to be that.

Balancing empowerment and protection

So, hallelujah MCA and supported decision making! And I fully support the Law Commission recommendations about developing a formal scheme but I just hope it is user friendly, one that embraces difference and promotes interdependence.

We don’t see any difference for Grace. She will slowly move into her own house. She tells me she is coming home every Friday night so I can make her breakfast in bed every Saturday. I’ve told her I’ll be coming over for a film night regularly and Dad will be round to do the garden and watch comedy with her. She won’t be pushed out for the sake of an artificial construct. It will be whatever she wants it to be.

So here we are on a precipice, next week she will mix with very different academically abled students and she will charm them as she has charmed everyone who has met her. She is on the edge of moving to her own house and she will embrace the challenges that will bring. I hope we will embrace them all too. We are all practising ‘empowerment and protection’, by balancing these two competing concepts – and, so far, the right one is winning.

Happy birthday MCA.

• The National Mental Capacity Forum