Revisions to the Continuing NHS Healthcare (adults) Framework

The Welsh Government has published for consultation changes it proposes to make to the Continuing NHS Healthcare Framework (for adults) and its accompanying  Decision Support Tool.  The consultation document and drafts of the revised Framework and the Decision Support Tool can be accessed by clicking here.

The consultation document states that there ‘is no intention for policy changes made through this process to impact on the eligibility threshold for CHC, which is well-established and based on the consideration of a ‘primary health need’’.

The Welsh Government states that the proposed changes are designed to provide ‘greater clarity and presentational style’ – and that the proposals retain the core principles of the existing Framework which it states as being to:

put people first, involve and engage with them and their representatives throughout the process and ensure decisions affecting them are informed by evidence. There is a continued emphasis on care and support that is focused on need and that is co-ordinated and avoids any unnecessary upheaval to an individual’s way of life.


In relation to the Decision Support Tool, the consultation document states that the changes include an emphasis on the Tool not being used as a ‘scoring mechanism’.  It additionally states that the Tool is broadly unchanged, with a ‘few minor amendments’ (although on cursory inspection this is debatable – eg see the cognition change proposed) – the changes being:

  • Behaviour – add reference to self-harm as an example.
  • Mobility – revise notes. For example, replacing the reference to the 2001 National Service Framework for Older People with a more general emphasis on assessment.
  • Nutrition – revise wording and examples in the low, moderate, high and severe categories.
  • Psychological and Emotional Needs – clarify wording around the individual’s engagement in the care process.
  • Cognition – replace the previous highest level of identified need of ‘severe’ with ‘high’.
  • Drug Therapies or Medication – replace references to ‘non-concordance’ with ‘refusal or misuse of medication’.
  • Other Significant Care Needs – remove the levels of need in order to better reflect its purpose to capture areas for wider consideration.

The consultation closes on the 21 August 2019.


Photograph of ‘Lyn Padarn’ by Richard Jones -@lluniaurich



NHS Continuing Care (NHS CHC) for children and young people – Welsh Government Consultation

The Welsh Government has published a consultation paper on proposed revisions to the NHS CHC guidance for children and young people – which can be accessed by clicking here.[1]

This proposal comes three years after the Social Services and Well-being (Wales) Act 2014 came into force with explicit limitations on the extent to which social services could provide for the needs of disabled children – and aligned NHS CHC law for adults and young people. Over a year ago a paper in The Rhydian: on-line Journal of Social Welfare Law drew attention to the profound deficiencies in the Welsh Government’s 2012 NHS CHC for children and young people.[2] It pointed out that many Welsh local authorities were inappropriately funding substantial packages for profoundly disabled and ill young people: packages that should be funded by the NHS in Wales. The paper called on the Welsh Government to provide urgent updated and ‘clear’ guidance on this important question.

It is highly debatable whether the proposed revisions to the 2012 guidance address the criticisms made in The Rhydian: on-line Journal paper. It is highly debatable whether the Welsh Government is prepared to require LHBs to accept their legal responsibilities for children and young people whose health care needs are above the legal limits of what social care authorities are permitted fund.

Photograph of Teifi Pools Strata Florida.
[1] Welsh Government Children and young people’s continuing care (2019) at – consultation closes on the 9 August 2019.
[2] L Clements NHS Continuing Care (CHC) responsibilities for Children and Young People in Wales Rhydian: Wales Social Welfare Law on-line (2018) 12-18.


Charging for social care changes

The Welsh Government has made uprating changes to the social care charging rules – which have now taken effect. The head-line changes are increases to:

  • the maximum non-residential care charge to £90 per week;
  • the residential care capital limit to £50,000; and
  • to the residential care personal expense allowance to £29.50 per week.
The Part 4 and 5 Code of Practice (Charging and Financial Assessment) has also been updated (to reflect the amended regulations). For further details click here.


Photograph of ‘Caenarfon Castle’ by Richard Jones -@lluniaurich

Welsh Independent Living Grant (WILG): Policy Reversal

Julie Morgan, Deputy Health and Social Services Minister, has announced a major change to the process of winding down the WILG.  There will be (with immediate effect) a ‘pause of the transition’ to allow for revised arrangements that include:

An independent social work assessment will be offered to all former ILF recipients who are unhappy with their care and support package and would like a second opinion. This independent view will mirror the arrangements that existed under the ILF and so will restore a tripartite decision making system;

Welsh Government will provide additional funding to local authorities for the cost of independent social workers and additional care hours that may result from these independent assessments. This means that there can be no question of changes to a care and support package being a cost cutting measure;

The under pinning principle in undertaking that independent assessment is that the result should be consistent with people’s agreed wellbeing outcomes.  As there is no financial barrier, no-one need have less favourable care and support than they had under ILF.

In making her announcement the Deputy Health and Social Services Minister said that these new ‘arrangements acknowledge the historical entitlement of former ILF recipients’.

Credit must go to the Welsh Government (even at this late stage) for looking at the facts and doing the right thing.  Enormous credit must however go to Nathan Lee Davies for his extraordinary “Save WILG” campaign – enlisting the support of Welsh Labour conference, the BBC and many other key opinion formers.  The Minister also paid tribute to Nathan in her announcement.

To link to the Minister’s announcement (and Nathan’s comments) click here and to link to the BBC story of the announcement click here.

 Photograph of ‘Traeth Dinas Dinlle / Dinas Dinlle Beach’ by Richard Jones -@lluniaurich







Closure  of the Welsh Independent Living Grant

A case of Wales following in the footsteps of England?

While attention is focused on the countdown to leaving the European Union, one should not lose sight of the impending closure of the Welsh Independent Living Grant (WILG) which has been earmarked for the 31 March 2019.  The impact of the closure is already being felt by people who have transitioned from the WILG to Local Authority funded care and support.

A strenuous and valiant campaign to # SaveWILG has been led by Nathan Davies.

The sustained #SaveWILG campaign has gathered momentum in the final weeks before the proposed closure and has been given greater impetus by a letter from the Deputy Minister for Health and Social Services.  In this letter Julie Morgan, sets out the outcome of the Deep Dive Review that was put into place by the previous Minister to evaluate the process and outcomes of the re-assessment of WILG recipients who have been re-assessed for Local Authority Services. The letter notes that 157 disabled people (of the 1,174 people who have been re-assessed – i.e. 13%) have suffered a reduction in their care and support provision.

The Minister has since met with representatives of the #SaveWILG Campaign Group who have presented her with a dossier of evidence to reconsider her decision.

The BBC Wales Live news item 8 minutes 40 seconds) has highlighted the impact on disabled people who have been reassessed and the impact on carers. The long term costs of leaving disabled people with high level care needs with insufficient support was highlighted by Tanni Grey Thompson who supports the continuation of central government funding.

Nathan Davies on behalf of the #SaveWILG  has written an impassioned open  letter  to the First Minister for Wales  in which he sets out the deep concerns of disabled people who have been moved to local authority care and support, reminding him that during the campaign for the office of First Minister, and in response to a question from the BBC he said,

… if an independent evaluation shows the new system is not working as well as the old one then I would be prepared to reverse it because this is money intended for a very specific number of people for a very specific purpose.

One must reluctantly come to the conclusion that the Welsh Government is following in the footsteps of England, albeit three years later.  The closure decision has given scant consideration to the evidence from England on the effect of closure on disabled people and their carers and Wales has been prepared to continue along a trajectory that risks destabilising the established care and support  of WILG recipients.  A critical analysis of the intended closure of the WILG can be found by clicking here.

The Deep Dive Review, referred to by the current Minister for Health and Social Services, was intended to be an independent audit of the process, impact and outcomes of assessing WILG recipients for transition to local authority services. Embedded in the review was the possibility of reversing the decision. If not it was merely a cosmetic exercise.

The detail of the Deep Dive Review has not been made public as yet. There is neither information as to whether local authorities provided each previous recipient of WILG with independent advocacy nor if they offered a carers assessment to relevant carers.

It is an indictment of a review which was supposed to give reassurance to disabled people about the veracity of the evaluation of the process of transition to local authority services, that disabled people were not consulted about their experience of the process  and their satisfaction with the outcomes.  Local Authorities representatives were however consulted and provided reassurance to the Minister that no major implementation issues had come to light.

The letter from the Minister to the #SaveWILG campaign notes that some of the previous recipients of WILG are no longer eligible for social care and have been moved to NHS Continuing Health Care.

Unlike in England, recipients of NHS Continuing Health Care are prevented by statute from having a Direct Payment to arrange care and support. This is a significant impediment to independent living and yet this has not been attended to in legislation (although in England this barrier has been removed).

It now rests with the Minister of Health and Social Services to reverse the decision to close the Welsh Independent Living Grant and to offer a clear view on how Wales will meet the needs of disabled people with complex needs.

The case note R (CWR) v Flintshire County Council(2018) is a salutary reminder of the experience of a disabled person in need of care and support in Wales under the Social Services and Wellbeing (Wales) Act 2014 and illustrates the understandable fears of disabled people when being assessed for care and support.

The case is also a clear reminder that it is possible to effectively challenge unfair, unlawful or irrational decisions by local authorities.

A Rhydian News item written by Ann James and photograph of ‘Cartre’r Chwarelwr Quarryman’s home’ by Richard Jones -@lluniaurich.

Can you cope?

It’s a simple question – yes or no?

If you are a parent of a disabled child – it is a question, when asked by a social worker, that you may dread.  If you say ‘yes’ you are at significant risk of having your support cut.  If you say ‘no’ your child is clearly at risk.  Instead of addressing this by providing extra support – it appears that some families are being threatened (explicitly or tangentially) with the ‘safeguarding’ process.

Writing over 20 years ago the late, great and delightful Ken Simons noted how many families were fearful of complaining or asking for more help because of implicit threats of this kind (in his research – the withdrawal of services if a request for additional help was made).  In his view it did not ‘take many incidents of this sort to undermine the confidence of families, particularly when they are coupled with what appears to be a worrying lack of commitment on the part of social services’.  He then cited an interviewee: “They will not commit themselves in any shape or form until there is a crisis”.[1]

In my work, I am coming across more and more families with disabled children who are experiencing implicit threats of this kind.  It appears, however, that for some their predicament is even worse.

BBC Radio Gloucester has aired two programmes[2] which recount how families who have asked their council for more help (and/or made a complaint about social services failings) have then been accused of fabricating the extent of their child’s illness / impairment (FII[3]).  The families, are being supported by the local Parent and Carer Alliance C.I.C.

The BBC has had expert advice to say that it would be expected that a county the size of Gloucestershire would have one case of FII every 2 years[4] – but the programme has heard from over 12 families who claim to have been accused of this (after requesting help / complaining).

A recent ‘post’ by the 2 tired and a toddler blog[5] included details of a survey it had undertaken (and which received 113 individual responses).  The blog accepts the methodological limitations of the survey but its findings are troubling.  Overall, 33% of those responding surveyed had been threatened with child protection proceedings and 30% were threatened with the removal of their children (ten councils are named in the survey).  The blog considers that a ‘significant point’ was that in 30% of the cases the local authority action followed a request by the family for help, and of these:

  • 25% were threatened with child protection proceedings;
  • 32% were threatened with removal of children;
  • 41% were directly accused of FII;
  • 66% were indirectly accused of FII (concerns raised for seeking 2nd opinion seeking diagnosis or knowing medical terminology for example).

The blog notes (a point echoed in the testimonies of families interviewed by BBC Radio Gloucester) that ‘only parents who have been accused of fabricated and induced illness can really say how far reaching and completely devastating these accusations are’.

Click here to access the survey details.

For a resource note concerning the misuse by local authorities of their ‘protection’ powers click here.

Image ‘Crossing the Irfon at Caer Beris, Builth Wells’.


[1] Ken Simons I’m not complaining, but … (Joseph Rowntree Foundation 1995) p.34
[2] BBC Radio Gloucester 10th December 2018 Mark Cummins programme at at 2:07:27 and 11th December 2018 at 2:20:17.
[3] Fabricated and induced illness.
[4] BBC Radio Gloucester 11th December 2018 Mark Cummins programme at at 2:23:40.
[5] A blog that focuses on the needs of people with Ehlers Danlos Syndrome (a connective tissue disorder).

Action on Disability: The Right to Independent Living

The Welsh Government has published a consultation paper setting out how it intends to fulfil its obligations under the UN Convention on the Rights of Persons with Disabilities: the paper is entitled Action on Disability: The Right to Independent LivingAlison Tarrant of Cardiff Law School has written a critical analysis of the consultation paper in the current volume of the Rhydian Online Journal (volume 2) which can also be accessed by clicking here.


Image ‘Brecon Beacons’.


Continuing NHS Healthcare: legal challenge

A briefing note by Julie Burton Law concerning a successful legal challenge to a Local Health Board’s refusal to provide adequate replacement (respite) care for a disabled young adult.  The note identifies the many obstacles faced by families in accessing suitable healthcare support of this nature – not least the lack of natural justice in the Local Health Board’s decision making process.  However, as it makes clear, seeking legal advice and challenging decisions can lead to good resolutions.

For a copy of the briefing note – click here.

Image ‘The Teifi’ near Tregaron

Elaine McDonald

It is reported that Elaine McDonald has died.  She was by all accounts an extraordinary person and I hope she is remembered for this and her brilliance as a ballerina.  I did not know her personally, but sadly her name will forever be linked in my mind with injustice, indignity and indifference.

Rhydian Fôn James wrote a brilliant letter to BASW concerning her dreadful Supreme Court judgment and its likely implications, and sadly his fears have proved to be correct.  I (like many others) simply managed to write an angry paper about  it.  Elaine’s case was a litmus test: a measure of how civilised a society we really are. It is a test that the Royal Borough of Kensington & Chelsea and our judicial system failed.

For a wonderful tribute to Elaine McDonald see Ally Writes blog Fragments from a Half Life ‘Our Butterfly Has Flown’- click here.

Luke Clements


Image ‘Wild Garlick’ photograph by Dr Martin Elliot Research Development Office at the Wales School of Social Care Research and landscape photographer


Continence supplies from NHS Wales

The Welsh Government is to be congratulated in terms of putting their hands up and amending key guidance concerning continence supplies.  In its recently released circular WG Guidance for the care of children and young people with continence problems (WHC/2017/044) it states that previous guidance that placed a limit of four continence pads a day per young person was ‘inconsistent with public law principles and a breach of children’s’ dignity’ (para 8).  The change results from action taken by the Cerebra Legal Entitlements and Problem-solving (LEaP) Research programme and Cerebra’s news story on this success can be accessed by clicking here.

Image ‘Sugarloaf & Skirrid’ photograph by Dr Martin Elliot Research Development Office at the Wales School of Social Care Research and landscape photographer