A family at breaking point

By Celia Kitzinger, 23rd April 2023

This was a distressing hearing to watch because as it unfolded it became increasing clear that the parents were at breaking point in trying to care for their disabled daughter.  The Official Solicitor was clearly pushing for more support for the family from the local authority – who seem to have made some steps in that direction, but clearly not enough to prevent what the judge thought might develop into a “dramatic situation”.  

My understanding is that the court cannot order a local authority to provide additional support, but the judge emphasised his view that it would be in the protected party’s best interests that they should do so, and asked that the order be drafted to reflect that, with the hope and expectation that some additional support would be put in place before the next hearing (which isn’t for another three months).  

I had asked to observe two hearings before HHJ Marin on the afternoon of Wednesday 19th April 2023,   one at 2pm and one at 3pm, both listed as public hearings and both dealing with “Section 16 Health and Welfare”.  This refers to the section of the Mental Capacity Act that says the court has the power to make decisions if a person lacks capacity in relation to either their personal welfare or their property and affairs.

At 10.09am, I sent a request for the links to these two hearings to the email address given in the listing, and I resent my email (with “URGENT” in the subject header) when I hadn’t heard anything from the court by 13.51, just nine minutes before the first of these hearings was supposed to start.  I received the MS Teams link for the first hearing at 13:59 with a message saying “Apologies we were awaiting the Judge’s consent” – which is odd, because I don’t think there was anything for the judge to consent to.  It was a public hearing!  (The link for the second hearing followed at 14:06.) Because I received the link so late, it was all a bit of a scramble to get into court on time, but I made it for the start of the hearing, and was able to request a copy of the transparency order (which arrived at 14:09) and is in the standard terms.  This blog post is just about the 2pm hearing (COP 14062580) 

The hearing

Usually, the judge asks counsel for the applicant to introduce the people in court. In this case that introduction was done by Alex Schymyck of Garden Court Chambers who said he was acting for the applicant local authority, London Borough of Wandsworth.  The barrister for the person at the centre of the case (I’ll call her “Lizzie”) was Zimran Samuel of Doughty Street Chambers, acting via the Official Solicitor. There were also some other people in court including professionals from the local authority (one was a social worker), and (on separate screens) Lizzie’s mother and father.  

Usually the applicant barrister also provides a short background and summary of the case, as recommended by the former Vice President of the Court of Protection, Mr Justice Hayden, who points out: “Whilst the judge and the lawyers will have read the papers and be able to move quickly to engage with the identified issues, those who are present as observers will often find it initially difficult fully to grasp what the case is about’.  Unfortunately for me, this didn’t happen in this case.  (However, I was very pleased that HHJ Marin was responsive to my email – sent via the court administrator –after this hearing and before the 3pm hearing explaining that an opening summary would support transparency: at the invitation of the judge, counsel for the applicant provided an excellent summary for the 3pm case).

In this case, though,  the court moved quickly on to consider the “agreed draft order” – leaving me with no idea what it was all about.  I learnt that the order agreed between the local authority and the Official Solicitor provided for “the ICB to be joined as a party…. for a variety of further evidence to be obtained and put before the court… a s.49 order for an updated capacity report and the usual provisions regarding wishes and feelings”.  I think counsel also said that the plan was for the parents to be asked to join as a party to the proceedings. At this point, I thought the judge would just approve the order and I would be left none the wiser what it was all about. In fact that didn’t happen.

Instead, counsel for the Official Solicitor (offered the opportunity to speak after counsel for the local authority had completed his submission) referred to “a family very much struggling to cope… a vulnerable young lady on a broken bed with mould growing around her”.  He felt the court should act with “a view to helping that sorry situation” by ensuring “the right support from the applicant” so that the family is not “set up to fail”.

The judge responded by saying: “The parents are under immense pressure here and it’s really unfair to expect them to do so much.  It’s a long time before this case is back in court.  What can be done between now and then to alleviate their burden?  I appreciate the broken bed isn’t going to be sorted out in 10 minutes, but in terms of actual human support, what can be done so they can have a breather and spend time with their other children?

It’s within the applicant’s gift to provide support”, said the Official Solicitor, “and I know Lizzie’s mother would jump at extra support”. 

The judge checked that the parents understood the order.  Both had, apparently, attended a pre-hearing meeting at which (they said) it had been explained to them, and they were “fine with it” (father). 

The judge said: “The parties have agreed a whole package of information that will be collected so parties can sit down with all the information they need to decide what to do.  My concern is the pressure you’re both under, and the case is not back before July. What can be done between now and then to provide the family with extra support because – forgive me if I’m wrong – but it looks to me as if this family is coming up to breaking point”.

It was established that there had recently been an increase in direct payments to allow Lizzie to attend a day time respite centre, but that was only available during school holidays – which (as the judge said) meant that between now (April) and the next hearing in July “you’ve got the bulk of the caring haven’t you?”.

I realised at this point that Lizzie’s mother was becoming tearful.  “Ask the social worker”, she said to the judge: “I’m a bit emotional”.

The social worker explained that the current package involves

  • 48 nights per year at a respite centre (with one-to-one overnight care for Lizzie)
  • 20 hours per week term-time care
  • 30 hours per week during school holidays
  • 2 days per week at day respite during holidays

That’s still very little,” said the judge, “given the high level of care that Lizzie needs. I accept the Court of Protection can only go so far, but in terms of best interests I’m wondering if I could make a declaration that the local authority and the Official Solicitor should meet and see what can be done.  If these parents break down because they can’t cope with looking after Lizzie any more, it’s going to be a much more dramatic situation – and on my reading of the papers, we’re on the road to that situation”.  He turned to the parents and told them to get in touch with the Official Solicitor’s representative “and set out what else you need”.

The mother was openly weeping and clearly distressed at this point, wiping her eyes on her sleeve.  “We’ve asked for all these things before”, she said, “but it’s never been done”.  

There was then a discussion about signposting the family to solicitors and offering them assistance in finding legal aid.  “Thank you for your very kind consideration”, said Lizzie’s father.  “We need help with our child, so we can carry on. We are trying our very best”, said Lizzie’s mother.

All the professionals recognise that you and your husband are doing a very good job”, said the judge. “But you are being asked to do something superhuman, and it’s not fair on you.  Before the next hearing there must be a professional’s meeting about what can be done immediately. I want a recital in the order and I will be very concerned if, when we come back, I hear nothing’s been done”.  

Background to the case

After joining the hearing, I googled both lawyers and sent them emails asking for their Position Statements and received one the next day, and the other the day after that. Reading the Position Statements gave me a much better understanding of this case.

I learnt that Lizzie is a teenager who lives at home with her parents and two siblings and has a diagnosis of “spastic quadriplegic cerebral palsy affecting all four limbs, developmental delay, asthma and occasional focal seizures, food allergy, severe speech and language impairment and severe learning difficulty…. [She] has significant mobility difficulties and often falls to the floor. She requires 1:1 at all times.”  

This case started (I think only a few months ago) when the local authority made a court application to authorise Lizzie’s deprivation of liberty in a specially-designed cot bed with doors on all sides that cannot be opened from the inside.  This is to prevent Lizzie from falling out and suffering harm during the night – and Lizzie’s parents support its use.

But when the Official Solicitor’s representative visited Lizzie at home a few days before the hearing, the parents told him that the bed is not safe. It needs servicing.  There is mould in Lizzie’s bedroom and bathroom. It became clear that the parents were struggling. The mother stated that everything looks good on paper, but that’s not the reality. Carers don’t show up, they’ve asked for training on restraint and none has been provided, they haven’t had a carer’s assessment since before the pandemic, and Lizzie is sometimes self-harming.  The Official Solicitor concluded “there is concern for the long-term stability of the care package. It is recorded in the care plan [Lizzie’s mother] seems as though she is burning out…. The applicant is requested to consider a carers assessment on her to consider how she can be supported…. For example, Lizzie loves music, it could be explored if there are any music groups she can attend… Lizzie gets distressed when she is unable to mobilise [and] it may be that the applicant can explore how they can support Lizzie to mobilise…. It is submitted that there needs to be a deeper exploration into the behavioural issues Lizzie has….”.  The Official Solicitor also wanted consideration of adaptations to the garden to support Lizzie in accessing the garden with minimal support (the parents would like to put in a sensory garden for her).  There is a long list of “further evidence” required along these lines (including reports from Lizzie’s occupational therapist, physiotherapist, speech and language therapist, and from her school) to try to work out what support she needs.

It seems as though a case that started as a relatively contained single-issue case concerned with “authorising the deprivation of liberty arising from the arrangements for Lizzies accommodation and care”, i.e. the cot bed (according to the Transparency Order issued on 13th March 2023) has become, just over a month later, a much broader concern about a care package at risk of collapse.  It was good to see that the Official Solicitor and the judge recognised the family’s situation and were doing what they could to address it.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 420 hearings since 1st May 2020 and is a prolific blogger.  She is on LinkedIn (here), and tweets @KitzingerCelia

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