By Jenny Kitzinger, 20th October 2026
I was appointed as Welfare Deputy for my sister in 2009, very soon after the Mental Capacity Act 2005 came into force (in 2007). I’m intrigued to observe how applications for Welfare Deputyships are treated in the court today, especially as I know that there’ve been significant developments in case law relating to welfare deputyships over the last few years.
I was therefore interested to see a hearing listed on 2nd October 2026 about the “appointment of a personal welfare deputy” (COP 20022119). This case was before Tribunal Judge Holmes, sitting remotely at First Avenue House.
The case was listed as a directions hearing. However, in this brief 30-minute hearing, the judge decided to make an order immediately appointing the daughter as an ‘interim deputy’ with authority to receive relevant health and social care information about her mother (but not to make decisions). He also granted P’s daughter permission to apply to the court to become what the judge called, a ‘full deputy’ with some decision-making authority; another hearing will be held in about six weeks’ time for the court to decide on this.
In this blog I summarise what happened at the hearing and draw on my own experience of being a Welfare Deputy to consider what this interim appointment might achieve.
The hearing
The only people at the hearing were Tribunal Judge Holmes, P’s daughter, the judge’s clerk and me.
The judge started by explaining to the daughter (D) why I was present as a public observer. Then he provided a brief summary of the application for my benefit.
D had already been appointed as her mother’s Finance Deputy but she’d also applied to be a Welfare Deputy. The judge said he understood that she was motivated in this application by difficulties she was having “trying to get hold of information and be a voice for your mother”.
D had submitted a great deal of evidence along with her application and had provided additional evidence that morning in the form of a safeguarding review and complaint investigation report. She talked the judge through the ongoing problems she was facing and why she was seeking to become her mother’s Welfare Deputy.
There was a sad background to this situation which may be familiar to other people with aging parents.
D lives a long way away from her mother and stepfather, both of whom are now in poor health. Her mother, who has dementia, was previously supported with a care package at home but, after a hospital admission, she was discharged to a care home. Her stepfather, who continues to live at home, has post-stroke cognitive decline and needs four home care visits a day.
D experiences a huge difference in her ability to be involved in supporting her mother compared with her ability to support her stepfather: “I have full oversight of his [stepfather’s] care package”, she said, “but when it comes to my mum, I’ve no idea of what is going on”.
Daughter: I want to know where my mum is going to be happy and safe – should she stay in [the existing care home], go to another one, go back home? I don’t know because the people who’ve obstructed my oversight and have not provided her with any advocacy during major life-changing decisions are not giving me information.
Judge: Are they not inviting you to best interests meetings?
Daughter: […] I wasn’t aware even of the best interests decision to discharge her from hospital to the care home as a permanent resident.[1]
She said she’d requested evidence of DoLS and “that’s not been forthcoming” and also that “there was no investigation of what went wrong with her home care package”.
Since her mother has been in the care home, D has been concerned about support for her mother’s eating and drinking. There was an incident in 2025 when her mother had become dangerously dehydrated, leading to hospital admission and “a section 42 safeguarding concern was raised by the paramedics attending”:
“I could not understand why she was dehydrated because I was giving her food and fluid in the hospital and she was finishing her meals. I was pleading with them to understand how she became so dehydrated. Pleading for it to be sorted before she was returned to the care home.” (Daughter)
She requested an assessment from a Speech and Language Therapist – who confirmed that her mother was fine to drink fluids from an open cup. D believed that one possible source of the problem was that: “the care home had only been giving fluid in spouted beakers. She couldn’t cope with them”. Commenting on this, D said this was a “basic care” issue: “I’ve got a disabled son. I’m a nurse. And I’ve worked with a lot of families with disabled children”.
Her mother had also been subject to a “highly intimate” examination in August 2026 which her daughter knew would be very upsetting for her: “she finds these sort of examinations very distressing, and always has done”. But “they subjected her to this procedure without even asking me”. This examination had not, she added, led to any medication or care plan. When D tried to explore options (e.g. she suggested a local application of an oestrogen cream), this was misunderstood: “they saw this as me asking for HRT to help with her dementia – which I did not ask for”. There had also been problems, according to D, in ensuring the right information was put into care and funding assessments (“I requested a CHC checklist, which was done but because nobody divulged that my mother had behavioural issues, that wasn’t on the form”).
According to D she’s been “completely overwhelmed about everything I’ve discovered since I’ve begun practically supporting my mum”. She’s been left “pleading for information about how she is being cared for”. Without being provided with key facts, consulted, or listened to effectively, she feels hamstrung in trying to advocate for her mother.
The judge sought to clarify what decisions D thinks need to be re-visited.
Judge: Are you raising issues with her current placement?
Daughter: Yes, because they are not sharing things with me.
Judge: Would you be saying “move to a different placement”?
Daughter: I’m not sure – because I don’t know what would happen in a different care home […] Even though the social worker who did the first review concluded there was no reason to obstruct me from information, I’ve had no reason to see that that obstruction has been lifted. […] Continually, as I’ve been asking for information and trying to protect my mum, I’ve been told [I can’t have it] because I don’t have LPA [Lasting Power of Attorney] or deputyship.
The judge asked her what decision-making authority she might ultimately be seeking and he explored the possibility of making a personal welfare application to the court rather than, or alongside, a Welfare Deputyship application. But D explained she did not know enough yet to work out what the best course of action might be.
“I don’t feel I can make a fully informed decision … I’ve got so much to consider. What I’d respectfully ask the court to do is to give me the authority to access information about my mum from adult social care, safeguarding, the GP practice, the hospital, the care home and the home care agents prior to her admission [to hospital]. […] If I can get that information, I can make a decision.”
The judge stated that “You’ve notified [the relevant bodies about your application for deputyship] – and no one has responded” and that “there are no safeguarding concerns about you getting the information”. So, given the evidence he’d seen so far, he decided to make her an interim deputy with immediate effect, with the authority to “request such social and medical records as your mother would be able to request and receive such documents on her behalf”.[2]
Another hearing will be listed for the next available date six weeks hence.
Reflections
I’m glad the judge gave D the interim deputyship – she looked relieved, and the judge’s decision seemed like a pragmatic step to try to ensure that the relevant information is available for the next hearing.
It should not, of course, require a court order or a deputyship for appropriate information-sharing to take place. However, judges have recognised “public bodies and others responsible for the care of an adult without capacity” can be “anxious” about “the propriety of sharing information” with that person’s relatives, given that the person cannot give or withhold their consent for sharing information about them (Poole J, Parr v Cheshire East Council & Anor [2026] EWCOP 1 (T3)). In trenchant commentary on that judgment, legal commentator Alex Ruck Keene KC (Hon) recognises that concerns about consent in the context of a person lacking capacity to give it remains “prevalent” but is clear that in his opinion this anxiety is “a very problematic basis upon which to justify appointment of a health and welfare deputy”. This is because: “What Poole J could perhaps usefully have made clear is that they are simply wrong to have this anxiety. Within limits […] the MCA provides the workaround for a person’s inability to consent to relevant actions in the health and social care context in the form of s.5 (i.e. if sharing that information is determined to be in a person’s best interests).[3] In principle, this is of course correct. In a judgment concerning a Court of Appeal judgment against appointment of a Welfare Deputy, the President of the Family Court and the Court of Protection cautioned himself “against treating deputyship as a mechanism to overcome professional hesitation or institutional risk-aversion” (Sir Stephen Cobb at § 61, Re HB [2026] EWCA Civ 960) It may, nevertheless, work as such.
The Mental Capacity Act 2005 states that those making best interests decisions must “take into account, if it is practicable and appropriate to consult them, the views of […] anyone engaged in caring for the person or interested in his welfare”. In order to consult those persons effectively, there is clearly a need to provide information relevant to the decisions that need to be made. The MCA Code of Practice spells this out:
“The Act’s requirement to consult relevant people when working out the best interests of a person who lacks capacity will encourage people to share the information that makes a consultation meaningful.” [S16.20, Mental Capacity Act Code of Practice]
At the same time, the Code of Practice underlines the need to take into account data protection law and gives detailed guidance about the limits on what can be provided – including to a person who holds Lasting Power of Attorney or Deputyship (see Chapter 16 – “What rules govern access to information about a person who lacks capacity”?, MCA Code of Practice).
Health and social care providers have to be careful how they interpret their obligations. They need to ensure that the information shared is relevant to the decision to be made and balance the value of sharing information with the principles of safeguarding patient privacy.
In my experience, interpretation of such guidance (and other professional and legal guidelines) can vary by institution. In some cases, there is a tendency to err ‘on the side of caution’ (in terms of data protection) in ways that can undermine best interests processes for the person concerned. I suspect organisations may feel this is the ‘safer’ option because they are less likely to be held to account for erring in that direction. I also suspect some families/friends who clearly care for the person and are interested in their welfare are denied information because in fact no best interests process is followed at all or because clinical teams do not understand, or do not wish to comply with, the process.
On the basis of D’s account, it seems there have been some failures in communication and best interests decision-making consultation. The situation she described in relation to her mother now (in 2026) resonates with my own experience back in 2009 when I was engaged in a prolonged struggle to be appropriately consulted and informed in relation to my brain-injured sister, Polly.
We (Polly’s partner and wider family) were all denied access to some key information for the first six months after she was injured (the period before I became her Welfare Deputy in November 2006).
An inquiry conducted by the Health Board (prompted by my formal complaint) concluded that: “Whilst the investigative officers found much good practice in respect of Ms PK’s [my sister, Polly Kitzinger’s] treatment and care […] they found significant failings in respect of compliance with the requirements of the Mental Capacity Act 2005 and evidence of poor practice in relation to the Mental Capacity Act 2005 Code of Practice.” These failings include the clinical team neglecting to “provide Ms PK’s partner/family with sufficient information with regard to rationale for investigations undertaken, treatment changes, […] etc, to enable them to participate appropriately in respect to health and welfare decisions in Ms PK’s best interests”. [Cardiff and Vale University Health Board Investigation Report, 2011]
Even after I’d become Polly’s court-appointed Welfare Deputy (in November 2009), the problems continued. The Health Board investigation found failures “To give prior (sometimes any) information to the Welfare Deputy regarding several investigation and treatment decisions”.
There was also no attempt to seek my consent for these investigations and treatments, and this is particularly shocking since my Deputyship meant my consent was legally required in respect of most of those decisions.
The investigators concluded that “These failings highlight a general lack of understanding amongst professionals about the requirements of the Mental Capacity Act 2005…and especially about the role of the Court Appointed Deputy”. [Cardiff and Vale University Health Board Investigation Report, 2011]
I’d like to think that understanding of the MCA has improved since then. In my experience, there’s been much more recognition, more recently, of the need for families and for Welfare Deputies to receive relevant information (at least in some settings). But it was very depressing to hear D’s account of what she’d encountered in relation to her mother, and I’ve heard similar accounts from other people., and the problem has been reported across a number of judgments ((see for example, Cwm Taf Morgannwg University Health Board v RW & Anor [2026] EWCOP 10 (T3), and NHS South East London Integrated Care Board v JP (by his litigation friend, the Official Solicitor) & Ors [2025] EWCOP 8 (T3), and London Borough of Lewisham v SL (by her litigation friend, the Official Solicitor) [2025] EWCOP 51 (T3)).) So while, in principle, it should obviously not be necessary to appoint someone as a Deputy (interim or otherwise) to ensure appropriate information-sharing, in practice, this might be a pragmatic solution.
However, I wasn’t entirely convinced that even granting the interim deputyship would work in practice for D in time for the next hearing – especially given the wide range of organisations from which she is seeking information, including across adult social care, the hospital, and the home care agents. Even when an organisation is, in principle, cooperative – and there is no question about the information that should be released or the authority of the person requesting it, barriers can remain.
In my own experience, I encountered difficulties as Polly’s Welfare Deputy when I asked for copies of Polly’s medical records to be sent to the independent expert neuro-rehabilitation consultant that we commissioned urgently to review Polly’s condition, prognosis and best interests. The records did not arrive until 51 days after they were formally requested via my lawyer. This was in breach of the obligation to provide these records within 40 days under the legislation active at that time. When the records did finally arrive (after a lot of chasing), key information was missing e.g. the paperwork for a crucial series of clinical tests was incomplete and no radiology films were included (her chest x-rays, MRI scans, CT scans etc).
Of course, technology has advanced since 2009 – as has law and practice. Health and social care professionals are now more familiar with the Mental Capacity Act than they were in 2009; and also now have to comply with GDPR (and under current legislation must provide a patient’s records within one calendar month of receiving a valid request).
It may be that issues about where material is stored, how it can be shared, and with whom, is less problematic nowadays (or problematic in different ways). Back in 2009, I recall offering to photocopy a large lever-arch folder of paperwork myself to try to speed up the process. But many organisations now have electronic records and established systems in place for robust data sharing. D mentioned a particular software system deployed in her mother’s current placement. A quick online search found that this system (‘SystmOne’) – which is being offered for free to all care homes – promises seamless access to records across diverse services. It claims to have a clear access pathway, ‘proportionate’ and tailored depending on the access level required (including for people holding lasting power of attorney and for Deputies). It looks, on the face of it, as though some of the core records D needs might be relatively easy to access.[4]
I look forward to attending the December hearing and seeing what information D will have received, what decision-making authority she will seek as Deputy, and what the judge will decide.
Jenny Kitzinger is co-director of the Coma & Disorders of Consciousness Research Centre and Emeritus Professor at Cardiff University. She has developed online training on law, ethics and best interests and is on BlueSky as @JennyKitzinger and on Linkedin
Endnotes
[1] See also the Department of Health and Social Care statutory guidance on ‘Hospital discharge and community support guidance’ and a change made in January 2024: “the guidance now specifies that NHS bodies and local authorities should ensure that, where appropriate, unpaid carers and family members are involved in discharge decisions. This reflects the amendment to section 74(1) of the 2014 Care Act made by the Health and Care Act 2022”.
[2] This phrasing suggests the judge wants to create a Deputyship with the same wide-ranging powers as a P herself would have if she had the capacity to ask for the information herself. Given the range of interlinked decisions this daughter feels she may need to make, I can see why this is important and this framing of the order may help health and social care professionals to feel confident in information-sharing. But see: “Guidance for NHS regarding disclosure to individuals holding either a Lasting Power of Attorney or a deputyship.” This states that “relevant information can be disclosed to enable them [LPAs/Deputies] to discharge their role as attorney or deputy. This is not the same as the right of access under data protection law (Subject Access Request) as defined in Article 15, UK General Data Protection Regulation and Section 45 Part 3 Data Protection Act 2018, whereby a person can request all the information that a data controller has regarding them”.
[3] “Personal welfare deputies, principle and pragmatism, by Alex Ruck Keene KC (Hon) Local Government Lawyer, 21 January 2026
[4] For people with capacity to consent, some GP surgeries are currently trialling a new feature in the NHS App which allows a patient to submit an application to allow families and carers to access their records. https://www.nhs.uk/nhs-services/gps/health-services-for-someone-else-family-carer-access/apply-for-family-carer-access-nhs-app/. For myself, I’ve also supplemented my LPA and Advance Decision with a signed and witnessed letter stating that if I lose capacity to make my own health and welfare decisions then I’d like my wife, in so far as possible, to have access to all my records as if she were me (i.e., not restricted by health and social care staff decisions as to whether her request is ‘justified’ by its relevance to the decision that needs to be made).
