So, meanwhile...

There’s a lot going on here. We are in the middle of our application for Self Directed Care for Roch. A number of people are helping us with this – all of whom have been an absolute pleasure to work with. I think Team Roch can now rival Andy Murray’s back up team. An Occupational Therapist – Shelley – carried out an assessment to establish whether there were any new equipment needs. A social worker – Yvette - came to do the Self Directed Support Assessment and left us with the Financial Assessment form to complete (I hate forms!). This asks about our income, expenses and savings. The Council needs to work out whether we will have to make a contribution towards the cost of the support (this is likely).  The Support Assessment has been completed and the Financial Assessment form has been submitted (although they may come back to us on that one, requesting copies of evidential documents). Yvette biked through the rain to collect the form from us!

Once the likely amount of the personal budget has been worked out, a Support Plan has to be written up showing how the money will be spent to support Roch. We have been helped by a Charity in Richmond called RUILS (Richmond Users Independent Living Scheme) to prepare this and it is almost complete, thanks to Paula from RUILS, who also cycled through the rain to visit us at home. The plan is to employ two people to help Roch when I am at work. In preparation we have set up a separate bank account for this, as advised.The idea is that Roch will be their employer but the Council will provide most of the funding for their wages. So we need to get to grips with PAYE, employer's liability insurance etc. - happily there will be someone else to help us with this.

So, meanwhile, in response to a letter from Dr. Cable, addressed to the Chief Executive of Hammersmith Council, Roch’s employers have regrouped and written to Roch to defend their position.  The speed with which Dr. Cable responded to Roch’s request for assistance was impressive and we are very grateful to him. It certainly prompted Hammersmith to action.  No less than three letters were hand delivered here last Friday evening (obviously to beat the deadline given for a response). Each one echoed the last, although written by or on behalf of different departments (individuals). I’m sure blood sweat and fear went into those letters as they strove to defend themselves, accusing Roch of not cooperating, refusing to admit that they ignored his requests but managing to patronise him at the same time and finally providing a breakdown of figures that simply covers his basic pension entitlement.  They are such carefully worded letters, quite obviously vetted by their legal department. You would think they were dealing with a high powered legal firm, instead of an employee of 24 years, with a terminal illness. In the letter from the HR department, there was an apology for the three month delay in providing the figures (that was referring to Roch’s latest request, there was no apology for the almost three year delay since his original request, at a time when he had been told he could have as little as two years to live). They actually make me sick. Roch will be well rid of them.  Was there anywhere in any of those letters, an acknowledgement of the thousands upon thousands of pounds Roch has saved the Housing Department over the years? Any thanks for years of dedicated service? You must be joking. Instead they sought to blame him for the fact that because of his absence through illness, the Council is now losing money. Surely this is because they were stupid enough not to train someone up to his level of expertise? They’ve had three years to do it. It’s not as if they didn’t know about his illness. Goodness, he might have died within 14 months and then they wouldn’t have had him for as long as they did.

So, meanwhile, as all this is going on…I am preparing for our trip home. We are off to Dublin in August. Roch and I will stay with my brother at first and the children with my mother, then we travel to Dingle for a week. Back in March, I contacted the Irish MND Association to ask if they could recommend somewhere for us to stay in Dingle – they came back to me with admirable speed, and with a number of suggestions.  Everyone has been so helpful. The woman at Trident Holiday Homes – Geraldine, thank you for all your patient assistance  when I called and asked so many questions about the cottage, Tracy at the Irish MND Association, who is currently trying to organise equipment for us in Kerry and my namesake Deirdre, the supervisor at the holiday cottages. It looks like we’ll be travelling light on the clothes side of things as we have so much gear to bring with us! I am liaising with both Tracy and Jenny, our occupational therapist from Richmond Neuro Rehab. All equipment requested from the Irish MND Association has to go through her.

This will be the first year ever when I will do all the driving. I’m okay with this, although I know it will be tiring. I’ve done the Exeter run a number of times now, a couple of times down and back on the same day. The car journey has always been part of our holiday – and something that the kids enjoy.  We are breaking up our journey and staying at a Premier Inn in Wales along the way. Having learnt from our previous mistake, we have requested that the bed be raised and they have agreed to do this.

Some of Roch’s family will be coming to Dingle for part of our stay. It’s where they spent family holidays as children so hopefully it will be an opportunity for them to revisit happy memories together. Roch is also pleased because it means some of his brothers will be around to help out, giving me and the kids a chance to have a break now and then. We are looking forward to staying in bed until at least 10am every morning and taking things very, very, easy.  No timetables, no ‘must do’ no ‘have to’. Good food and drink, fresh air, lovely scenery (hopefully not obscured by sheets of rain, although I go prepared for this) and the best of company.  I am so pleased both Kate and Tom will be with us, and we are so lucky to also have the wonderful Maura, my sister. Maura will be staying with us – she has often come on our family holidays . In fact, over the years she’s been like a third parent for the kids. Dad, Mum and Maurie. There’s nobody like her.