Monthly Archives: May 2020

Reflections on three Months in Lockdown: Wave After Wave

As I look out, the sun is shining.  Uncharacteristically so for a Bank Holiday.  Aside from that though, it could be like any other.  Except it isn’t. This one marks the start of the 14th week of lockdown for Fran and I.  This is now our ‘new normal’.  Going outside feels unthinkable.  The little things I used to take for granted, nipping to the shops, putting fuel, in my car seem so far away and irrelevant.

Being completely honest, as I always am on this blog, it is a very bitter sweet time.  As I write this I feel guilty, as the reality is in many ways, I am in a privileged position. I am still alive, still healthy.  I have my own house, access to outside space, a hard won supermarket delivery slot.  All I really have to do is sit it out.

On the other, I find myself looking longingly at a photo of my parents back garden.  In a photo, Dad stands proudly over my parents latest project to keep themselves busy, a newly constructed garden pond.  Dad is glowing with pride.  Despite being over 70 and having a heart condition, he is in better shape than he ever has been in many years.  Photos are regularly sent, videos and FaceTime too.  I still get to see my niece growing up.  From a distance.  From a distance.  A few times I have been tempted to head there, to Cheshire, some 160 miles away.  I know I can’t though.  Not yet.  I have to stay the course.

In other positives, I have just been fortunate be able to take a holiday (Fran points out that I am legally allowed, but it still feels like a privilege) and proved to myself that I don’t need to be ‘away’ to take a holiday.  I even managed to go a couple of consecutive days without checking my work email.  As a combination of a workaholic and a control freak, I’ll take that as progress.

People often ask how we’ve got this far.  I’ll let you into a couple of secrets.  They are staples that have endured over time and I have gone back to them now and over the past few weeks overall.

Deferred Gratification

Also known as delayed gratification, this has got me through many things, especially my PhD.  At the risk of stating the obvious, it takes quite a bit of discipline to write a thesis, which in my case was way over 100 000 words.  These words need to be thought about, planned, researched, analysed, over analysed. kicked around, drafted, polished and then written up.  This is the short version of that process.  When I used to get distracted, I used to have to remind myself that the thesis wasn’t going to write itself.  I used to imagine what it would feel like to actually graduate. The reward would come later, with hard work, through grift and graft.

This sense of deferred gratification is what stops me getting on the road now.  I know I can’t.  When I do, and I finally get to see my family, to give them a long awaited hug, to sit in the garden and drink in the surroundings, to laugh together again, it will be made sweeter for the fact I have waited.  It is the longest I have ever gone without seeing my family.  The day will come though.

Wave After Wave

I’m not a huge golf fan.  That said, I find the psychology of sport fascinating and for this reason, I love the Ryder Cup.  The aspects of the team preparation are always really interesting to hear about.  The team structure and use of Captains, pairings and motivational techniques to create a team spirit in what is largely an individual game.  Over the years, the European Team have been particularly good at this.  There was one example where the Europeans were particularly meticulous in their preparation, drawing from famous figures across the world of sport.  As part of this quest to take in best practice, none other than Sir Alex Ferguson.  The slogan ‘Wave After Wave’ is used to encapsulate his famous attacking style which is designed to relentlessly subdue any opposition.  No let up, no compromise.

So I approach this time.  No let up, no compromise.  I can be a bit up and down, and I acknowledge that allowing myself to feel the ups and downs of a wave is fine.  Fundamentally though any doubt has to be dealt with, any any lingering negativity met with a positive energy to overcome it.  You have to dig deep. And if that isn’t deep enough, dig deeper.

It is this approach that we have also resolve the recent issues with Fran’s Social Work.  Thankfully, through a combined effort of my talking, Fran’s knowledge and diligence, and the use of common sense on the part of the Senior Social Worker, we have managed to have the review put on hold until we are out of lockdown.  So we haven’t solved it – just kicked the can down the road a little.  But at least it allows us to focus on facing more immediate challenges.  So when a problem arises, throw everything at it.  If that doesn’t work, throw some more things from a different angle!

It is true to say also though that the prospect of further cuts due to a Care Act Easement remains a possibility.  There isn’t the space to go into detail about that here, but basically an Easement means that under the Coronavirus Act, Local Authorities can suspend the Care Act.  What this has meant in practice for some Local Authorities is significant cuts to social care which have been acknowledged as ‘deeply troubling’.

Creativity

I’m having to make a conscious effort to put myself ‘out there’ with friends via virtual catch ups, check ins, and even the odd attendance at an online disco has been known.  I’m also watching films, trying to get out in the garden and I even read for pleasure the other week.  Wonders never cease!

Hope

I have clung on to this one too. I still have hope that in the long term, whilst acknowledging there is a long road ahead, that there will be a way ahead and we’ll get through in the mean time.  There is always hope.  One of the best bits of advice I was ever given was that if things get really bad, you can always allow others to hold on to hope for you.  Never underestimate the power of hope, as part of a wider mix of good things.

Wherever this finds you, I wish you well.  Here’s to staying the course, and staying safe.

Reduced to tears: A social work review during lockdown

I write this blog a day short of three months in self isolation.  I focus on the impact of an ongoing social work review for Fran during this time.  It is written with Fran’s permission.  To be clear at the outset, the purposes of this blog are to document the impact of such a review, carried out in the way it has been, at this particular point in time.  In summary, the nature, timing and conduct of the review has been unacceptable and inappropriate in numerous ways from the outset.

I also write it because I have the ability to do so.  Between us, Fran and I have 7 degrees. Fran has a degree in social policy and has written on personalisation.  Yet still we find these processes mindbogglingly complex, inaccessible and emotionally draining.  My worry is for those who do not have the means to articulate these experiences, and the very real risk of them being worse off as a result.

As with all I write, our experiences are just one story of hundreds of thousands of disabled people who go through processes like this every day.

Setting the scene

 It is fair to say that Fran has been engaged in an attritional relationship with social work for several years.  Her care package, which we are grateful to receive, is fundamental to how she lives her life.  She used to use her care package in a holistic and person centered way, to enable a full set of social, professional and personal needs to be met.

Then it got cut.  the first things to go were the social and professional aspects.  No longer could Fran use her Personal Assistants to do things like drive her to see friends when she was too tired, or attend work functions because performing effectively at a meeting as well as the return drive was too physically draining.

Over the years, I have watched with great sadness as Fran’s life has got smaller and smaller as a result of these cuts.

A previous review began to cut away at the personal aspects.  The PA’s do things like cook, wash and iron that Fran cannot do.  They also mean that Fran can work.  The alternative would be to not work, and be dependent on the state for support.  There is nothing wrong with this, but with support it is a matter of pride for Fran that she can work and make a contribution to society as she does so.  We have been told that we are the only couple that social workers are aware of who are both disabled, and who are both able to work.

We were able to reverse some of these cuts to the most basic aspects to Fran’s care plan after a previous review, but only after the intervention of our MP, whose timely and dedicated intervention was appreciated.

In summary, the support received has a fundamental impact on the safety, nature and quality of Fran’s life. This support has become more significant in recent times as Fran’s physical health has significantly deteriorated.

Social Work reviews

Given the above context dear reader, you’ll understand why social care reviews are the subject of angst.  Sadly, as a result of years of previous experiences, there is little trust in the social work team anymore.  What started out as a relationship with social workers which facilitated access to independence, has deteriorated into an adversarial one. The focus of reviews centres on how support can be reduced.

Despite deterioration in Frans health, she had not had a review for three years. They are supposed to take place on an annual basis.    That there is such a significant delay is a worry.

Quite why there is a need to undertake a review when it has been three years, and we are in the middle of a difficult period of self-isolation, is beyond me.

Yesterday, I woke up to find Fran in tears as a result of another insensitive request from her Social Worker. This is when I stepped in.

There have been so many ways in which the conduct of this review has been woeful that outlining them in detail would take longer than I have energy to go into now.  Some examples include:

 

  • A lack of attention to being person centered and to understanding Fran’s needs. Conducting a review when Fran cannot be physically seen is inappropriate

 

  • Setting arbitrary deadlines without understanding Fran’s current circumstances e.g. saying if there is nothing heard from Fran in 7 days it will be assumed that the care is no longer needed. This is not conducive to obtaining quality information and has been a cause of distress to Fran.

 

  • Repeated requests for information that had already been provided. There have been at least six requests for information over a period of less than 4 weeks.  At the outset to this review Fran took a day to completely rewrite her Care Plan with reference to the Care Act, which was 12 pages in length.

 

  • Asking inappropriate questions e.g. asking for the ‘rationale behind the need’ for support to maintain a habitable home

 

  • When a complaint form had been requested, supplying an inaccessible PDF form which doesn’t allow space for the complaint to be detailed

 

These are but a few of the problems which have been experienced.

 

As with previous reviews, the focus appears to be on looking at ways to reduce an already reduced care package.

 

The review is still in progress.  For me it raises so many questions. What is clear though is that it feels like the antithesis of what social work should be about.  Where is the support?  Where is the care?  Not once has Fran actually been asked how she is.

 

Is this really the best we can do?

 

We will fight on.  We will keep shining a light on these issues.  Thank you for reading.

 

Please Note: I am grateful for the solidarity and support we have received so far.  We have had kind offers of legal advice, requests for media interviews, and other generous offers of help.  I write this blog partly in response to those requests.  At the moment though, we don’t wish to take any more formal steps.