Thursday 9 October 2014

How do families unravel the mysteries of DOLS (Depravation of Liberty Safeguards)






As a parent carer of my 32 year old daughter, Erica I have just spent two week trying to understand DOLS  and whether or not this applies to her. Erica has profound and multiple impairments plus complex health needs.  In practical terms this means that Erica cannot walk around on her own, she does not use language or any other conventional system of communication. She requires assistance with all her routine tasks (washing, dressing etc) plus she has various clinical procedures which are part of her daily routine and keep her alive. She lives at home, but goes into a residential setting for her ‘respite’. Her services are 100% funded by continuing health care.

So why have I started on this quest for knowledge? A few months ago I mentioned to a health professional that I seemed to be having problems whenever I tried to contact Erica’s Care Co-ordinator – I was told this was because he was busy doing assessments for Dols. I then started hearing via the grapevine that local authority staff we spending 2 days a week carrying out assessments for Dols and that all adults who had one-to-one supervision would be assessed for a Dols. Many people said ‘that will include Erica’.  I thought that must be wrong as I thought Dols were for people with challenging behaviour who were restricted in some way by another person or organisation.

I then met another family with a son who has very similar impairments to Erica – the main difference being that he lives half the week in a nursing home and half the week at home. He has been assessed for a Dols.  I was now into the world of reality rather than rumour - so I decided to fill the gaps in my knowledge.  I started with the SCIE factsheet – that states Dols only apply if a person is in a hospital or care home.  But because I remained concerned that I was being told that my daughter would be assessed I continued my quest for understanding.

I contacted Steve an ex-colleague who is a barrister practicing in the disability field (@SteveBroach) and he sent me the legal information that I was missing.  One of the most helpful pieces of information being a blog by Lucy Series:
Lucy Series writes about the ‘acid test’ which is simply ‘is the person subject to continuous supervision and control, and are they free to leave?’ If this is the case then that person is deprived of their liberty. This set me thinking – what is supervision?  My daughter has one to one staff for all her waking time (apart from when she is in respite) – but is that supervision or is their role to enable her to access the world around her and carry out the health tasks that keep her alive. In other words, my daughter’s staff enable her to have greater freedom rather than restrict her ‘liberty’ – so I came down on the side of ‘enabler’ rather than ‘supervisor’ – perhaps I am being naive. 

However, I am still left with the issue – that whilst we are not stopping my daughter leaving home or anywhere else for that matter – she cannot leave.  She cannot leave because her impairments are such that she is not ‘able’ to leave. Thus she is deprived of her liberty by her ‘impairments’ rather than a person or agency.

Erica lives at home and from my reading of the court rulings and the law this will mean that however the local authority define ‘supervision’ she will not be assessed for a Dols. The only fly in the ointment is that she has regular respite in a residential setting, although she does not have one-to-one supervision whilst there – does this mean she will be assessed, although I am sure she will be at the bottom of the priority list.

Whenever I discuss the issue with my husband his question is always – does it matter? If Erica is assessed for a Dols will that impact on her life in any way?  I don’t know the answer to that question. I cannot find information written for families on the impact that a Dols will have on the life of the disabled person and on their family. If there is guidance for families hopefully someone will let me know – otherwise definitely ‘a gap in the market’.

Having journeyed down this route of knowledge I am left thinking – how have we managed to create a response which the system (both local authorities and courts) now does not seem to have the capacity to deal with.  I read the statistics on the increase in the number of Dols applications in this last year.  Whilst I don’t want to minimise the need to protect the right to liberty for vulnerable people – my local authority (and I am sure they are not the only ones) seem to be creaking under the sudden expansion of workload – and other aspects of their role are being neglected – thus leaving other vulnerable people more vulnerable.  Was there not a more sensible and reasonable approach to responding to the need to protect ‘liberty’?  Have other local authorities taken a more measured approach or found money to draft in more staff? Once again I write as a parent carer – my expertise is as a carer and not as a lawyer.

Comments or contact via Twitter would be welcomed.





Wednesday 7 May 2014

Dental care no longer free




We have recently discovered that dental care, sight tests and prescription are no longer automatically free for those people with the most severe impairments – under the new benefit system. My daughter, Erica who has multiple impairments, complex health needs and is now 100% funded by Continuing Health Care funding – is no longer automatically entitled to free dental care.  Erica, like so many others has been moved from Income Support to Employment Support Allowance (ESA).

A few months ago we received a letter from the NHS dental services in Darlington stating that she had been to the dentist in December 2013 and her dental care had to be paid by her.  We provided them with information about her benefits and then a few weeks ago received a letter stating that she was not eligible for free dental care and if she did not pay £18 she would be taken to court.

I found this information so unbelievable that I then phoned to discover the following. There are 2 types of ESA – one is ‘income-related’ and the other is ‘contribution-related’. Only those people on income-related ESA now automatically receive free dental care, free eye tests, free prescriptions etc. As Erica is one of the most severely disabled people in our community I cannot understand this type of ruling.  Following an hour on the phone to various people in the Job Centre Plus service we were then told that we could complete an HC1 form and apply for free care. 

The 18 page form arrived, I completed that and we now have a certificate (HC2) which entitles Erica to free care for one year.  A new form needs to be completed one month before the expiry date each year to continue this entitlement. Just in case – as a carer I do not have sufficient to remember to do – I now need to remember each year to apply for what was once an automatic entitlement.

I like so many other family carers take Erica to the dentist and without thinking tick the box stating that she receives ESA. Erica was picked up on a spot check – and I wonder how many other carers have made the same assumption that I made.  Erica was entitled automatically to free dental care when she received Income Support, so a change in benefit should not remove this entitlement.  However it does. I wondered whether there are other carers out there who have had to untangle this change.

Friday 25 April 2014

Return to blogging




It is now just over 6 months since I last posted anything on my blog. I have in the last few months met a number of my ‘Twitter’ friends who read my blog and follow me on Twitter and vowed that I will return to blogging and tweeting. So why the gap?

Towards the end of last year I was rather overwhelmed with supporting my parents who were both in residential care, packing up their house, managing their finances and supporting my daughter, Erica who had a gastrostomy fitted. My father then, rather unexpected died at the end of November.  He had spent 2 weeks in hospital and died the day after he was discharged.  I was so angry with the hospital that I felt I needed some distance firstly  before writing to the hospital trust to make a complaint and then writing again as a blogger – the length of that distance has extended to quite some time.

In considering coming back to being an active ‘social media’ person I have given a lot of thought to what being part of the Twitter and blogging network has meant to me.  Initially I entered this network as I felt I lacked knowledge about dementia and was finding supporting my father confusing and difficult.  Often I knew what I should do, such as not argue with him – but old patterns took over and I would argue and try to reason with him. I owe a lot of my knowledge about dementia and the care of older people to the wonderful bloggers I have come across through Twitter. The network has helped me to remain ‘person-centred’ in planning with my parents – so easy to lose the plot when services are so ‘service-centred’.  I hope I have also shared some of my thoughts and experiences with my readers.

I keep trying to convince myself that I have come to terms with my dad’s death. Making a complaint about the lack of dignity the hospital staff showed when treating my father before he died and the apology I received from the chief executive has given me some degree of closure. However, I am now very unsure of my relationship to ‘dementia’ – I read tweets about experiences others have with their loved ones and think – this does not apply to me and wonder if my relationship with dementia is over. Then I think – perhaps I have not come to terms with my father’s death.  Do I still have a contribution to make when others tweet about dementia – I am really not sure.

I read the tweets last night during the programme ‘Protecting our Parents’ and still feel very much part of a wider supportive network – it was those tweets that convinced me to sit down this morning and to starting ‘blogging’.  I have lots of issues stored up in my head that I want to blog about – so a promise to myself – post something on my blog at least once a month. The first issue for this weekend is – under the new Employment and Support Allowance free dental care is not longer an automatic right for the most severely disabled group of people. Well, more about that during the next week.

Thanks to all the Tweeters – who have encouraged me to return – it is a supportive network for those of us who are carers.