Alison Parr v Cheshire East Council & Anor

Ruby Parr is an 18 year old woman who lives at home with her mother, the Applicant Alison Parr, and her two siblings. On 3 December 2024, when Ruby was 17 years old, Ms Parr applied to be appointed as Ruby’s personal welfare deputy (“PWD”), submitting a COP1 application form, a COP1B supporting information form, a deputy’s declaration on a COP4 form, and a witness statement on a COP24 form. On 9 January 2025 Tribunal Judge Verman sitting as a nominated judge of the Court of Protection on consideration of the papers only, without a hearing, refused “the application for permission”. Ms Parr sought to appeal the decision but on 4 June 2025 DJ Ellington, noting that the January order had been made without a hearing, ordered that her application should proceed as one for reconsideration under the Court of Protection Rules 2017 (“COP Rules”) r13.4 and he transferred the application to the North West Regional Hub Court. On 28 October 2025, at a hearing observed by Elaine Willcox, Correspondent and Presenter with ITV Granada, DJ Sanderson made a Transparency Order in standard terms and gave permission to Ms Parr to make the application. He listed the matter for further consideration and directed that Ms Parr must serve the Local Authority and the ICB. On 17 November 2025, HHJ Burrows made further directions, on the papers only, allocating the application to a Tier 3 Judge and listing it before me for hearing on 18 December 2025. He joined the Local Authority and the ICB as respondents. Ms Willcox had applied for a variation of the Transparency Order to allow reporting of Ruby’s name and the names of members of her family. HHJ Burrows directed that her application should be heard by me on the same date.

By the Mental Capacity Act 2005 (“MCA2005”) s50(1)(b) permission is not required to bring an application by someone with parental responsibility for a person under the age of 18 who lacks or is alleged to lack capacity. Thus, at the time of the application and at the time of the decision on 9 January 2025 no permission was required. In any event, for the avoidance of doubt, permission has now been given and the issues for me now to decide are:

Ruby has an elder sibling and a younger sibling. Her parents are divorced and her father visits her three to four times a month. He was in court to support Ruby and his ex-wife. Ruby lives with her siblings and her mother, the Applicant. Ruby has a diagnosis of Idic 15 with partial duplication of chromosome 15, severe epilepsy (Lennox Gaustaut syndrome) and global developmental delay. She has a severe learning disability. She is a wheelchair user. She is unable to talk but can make some of her needs or wishes known. She is PEG fed. She has intractable epilepsy (usually over 30 seizures a day and sometimes a series of seizures in very quick succession) and chronic lung disease requiring bi-pap ventilation with oxygen therapy at night. She dribbles a lot and has secretions which accumulate requiring suctioning, sometimes deep suctioning. She can require respiratory and airway support at any time. She has had many admissions to intensive care and high dependency care. She requires constant care at home. Ruby attended school part time where she had a 1:1 carer but that provision has ended. She is known to a number of professionals at three different hospitals. She has an NHS Continuing Care Plan. Her conditions are life-limiting. She is at risk of dying suddenly from one of a number of causes associated with her conditions.

Ruby enjoys being cuddled, having baths, being taken outdoors in the fresh air, travelling in her vehicle when she particularly enjoys the sensory experience of travelling over uneven road surfaces, and using her sensory room at home.

I have been provided with a bundle of documents which includes medical evidence and assessments of Ruby. I have no hesitation in finding that Ruby lacks capacity to make decisions for herself about her personal welfare and health, including treatment decisions. She never will have capacity in those areas of decision-making. She in unable to make such decisions because of impairments and disturbances of her mind or brain.

Ms Parr is a former qualified NHS Nurse but stopped work in 2010 to become Ruby’s full time carer. Paid carers also attend on Ruby in her home but her mother co-ordinates the care and is the lead carer. It has been difficult to secure funding and appropriately trained carers due to the complexity of her needs. Indeed, at present the only paid carer support is for two nights a week. Ruby goes to respite care two nights a month. Ms Parr told me that she typically gest 4 hours of broken sleep a night because Ruby is often restless and needs attention at night.

Ms Parr is also the founder and leader of an award-winning charity that supports children and young people with Special Educational Needs and Disabilities and their families. It is called Ruby’s Fund and provides facilities and outreach support as well as advocacy for some of the county’s most vulnerable and complex cases. It has seven trustees and twenty volunteers working for it. Ruby is an ambassador for the charity. She is well known in her community.

Ms Parr attended the hearing accompanied by her ex-husband, her adult son, and by Ruby herself. Having listened to Ms Parr and having regard to the witness evidence and exhibits filed in support of the application, I have no doubt that she is highly attuned to her daughter’s needs, always acts in what she considers to be Ruby’s best interests, and is extremely well placed to assess what those best interests are, including in medical emergencies and when making decisions about her residence and care .

Throughout Ruby’s life, her mother has doggedly fought her corner. She has built up such expert knowledge of her daughter’s health and care needs that she often leads professionals to arrive at solutions and to make decisions about how to look after Ruby. Her energy and commitment appear to have no bounds. But Ms Parr told me that over the years, she has noticed increasing inconsistency and gaps in the resources available to support Ruby, and in communications amongst professionals, and between professionals and the family. She told me about the lack of continuity in care and support. This has led to frustration, anxiety, and obstacles to securing Ruby’s best interests which Ms Parr believes would be overcome were she to be appointed as Ruby’s PWD. For example:

The refusal of permission to apply for a PWD resulted in further media coverage on ITV local news and a further question in the House of Commons.

Countless health and welfare decisions have to be made daily on Ruby’s behalf. Some of those routine decisions are nevertheless of great importance, such as the need for suctioning and other interventions, the need for emergency healthcare, the provision of paid care in the home and respite care, applications, form filling, and planning There are also some very important one-off decisions on the near horizon. It is likely that a decision will be made early next year about whether Ruby should move out of the family home and into a unit run by a specialist care provider. If she does move, decisions will have to be made about the care provision there and her mother’s involvement. Planning for hospital admissions will have to be undertaken. Once she has left her mother’s care at home and has moved to a new location, Ruby could well be taken to a local hospital unfamiliar with her. Treatment decisions might have to be made there with urgency. Thus there will be a series of decisions flowing from a change of residence.

MCA 2005 s 16 provides:

“Powers to make decisions and appoint deputies: general

(1)

This section applies if a person (“P”) lacks capacity in relation to a matter or matters concerning–

(a)

P's personal welfare, or

(b)

P's property and affairs.

(2)

The court may–

(a)

by making an order, make the decision or decisions on P's behalf in relation to the matter or matters, or

(b)

appoint a person (a “deputy”) to make decisions on P's behalf in relation to the matter or matters.

(3)

The powers of the court under this section are subject to the provisions of this Act and, in particular, to sections 1 (the principles) and 4 (best interests).

(4)

When deciding whether it is in P's best interests to appoint a deputy, the court must have regard (in addition to the matters mentioned in section 4) to the principles that–

(a)

a decision by the court is to be preferred to the appointment of a deputy to make a decision, and

(b)

the powers conferred on a deputy should be as limited in scope and duration as is reasonably practicable in the circumstances.”

MCA 2005 ss1 and 4 are relevant to decisions about appointing a personal welfare deputy (“PWD”) and their duties once appointed. MCA 2005 s17 provides:

Section 16 powers: personal welfare

(1)The powers under section 16 as respects P's personal welfare extend in particular to—

(a)

deciding where P is to live;

(b)

deciding what contact, if any, P is to have with any specified persons;

(c)

making an order prohibiting a named person from having contact with P;

(d)

giving or refusing consent to the carrying out or continuation of a treatment by a person providing health care for P;

(e)

giving a direction that a person responsible for P's health care allow a different person to take over that responsibility.

(2)

Subsection (1) is subject to section 20 (restrictions on deputies).”

MCA 2005 s20 provides:

“Restrictions on deputies

(1)

A deputy does not have power to make a decision on behalf of P in relation to a matter if he knows or has reasonable grounds for believing that P has capacity in relation to the matter.

(2)

Nothing in section 16(5) or 17 permits a deputy to be given power—

(a)

to prohibit a named person from having contact with P;

(b)

to direct a person responsible for P's health care to allow a different person to take over that responsibility.

(3)

A deputy may not be given powers with respect to—

(a )the settlement of any of P's property, whether for P's benefit or for the benefit of others,

(b)

the execution for P of a will, or

(c)

the exercise of any power (including a power to consent) vested in P whether beneficially or as trustee or otherwise.

(4)

A deputy may not be given power to make a decision on behalf of P which is inconsistent with a decision made, within the scope of his authority and in accordance with this Act, by the donee of a lasting power of attorney granted by P (or, if there is more than one donee, by any of them).

(5)

A deputy may not refuse consent to the carrying out or continuation of life-sustaining treatment in relation to P.

(6)

The authority conferred on a deputy is subject to the provisions of this Act and, in particular, sections 1 (the principles) and 4 (best interests).

(7)

A deputy may not do an act that is intended to restrain P unless four conditions are satisfied.

(8)

The first condition is that, in doing the act, the deputy is acting within the scope of an authority expressly conferred on him by the court.

(9)

The second is that P lacks, or the deputy reasonably believes that P lacks, capacity in relation to the matter in question.

(10)

The third is that the deputy reasonably believes that it is necessary to do the act in order to prevent harm to P.

(11)

The fourth is that the act is a proportionate response to—

(a)

the likelihood of P's suffering harm,

(b)

the seriousness of that harm.

(12)

For the purposes of this section, a deputy restrains P if he—

(a)

uses, or threatens to use, force to secure the doing of an act which P resists, or

(b)

restricts P's liberty of movement, whether or not P resists,

or if he authorises another person to do any of those things.”

The Mental Capacity Act Code of Practice addresses the role of the COP and court-appointed deputies, including PWDs at Chapter 8.

In G v E [2010] 2512 (COP), Baker J held:

“57 The Act and Code are therefore constructed on the basis that the vast majority of decisions concerning incapacitated adults are taken informally and collaboratively by individuals or groups of people consulting and working together. It is emphatically not part of the scheme underpinning the Act that there should be one individual who as a matter of course is given a special legal status to make decisions about incapacitated persons. Experience has shown that working together is the best policy to ensure that incapacitated adults such as E receive the highest quality of care. …

61 It is axiomatic that the family is the cornerstone of our society and a person who lacks capacity should wherever possible be cared for by members of his natural family, provided that such a course is in his best interests and assuming that they are able and willing to take on what is often an enormous and challenging task. That does not, however, justify the appointment of family members as deputies simply because they are able and willing to serve in that capacity. The words of section 16(4) are clear. They do not permit the court to appoint deputies simply because “it feels confident it can” but only when satisfied that the circumstances and the decisions which will fall to be taken will be more appropriately taken by a deputy or deputies rather than by a court, bearing in mind the principle that decisions by the courts are to be preferred to decisions by deputies. Even then, the appointment must be as limited in scope and duration as is reasonably practicable in the circumstances. It would be a misreading of the structure and policy of the statute, and a misunderstanding of the concept and role of deputies, to think it necessary to appoint family members to that position in order to enable them better to fulfil their role as carers for P.”

Mr Justice Hayden, then Vice-President of the COP, provided an authoritative review of applications for PWDs in Lawson, Mottram and Hopton [2019] EWCOP 22. It is essential reading for anyone contemplating an application for a personal welfare deputyship. Instead of faithfully copying long passages from that judgment, including extracts from Chapter 8 of the Code of Practice, I refer to it in full but should summarise the key points with which Hayden J ended his judgment:

So far as I am aware, 8.38 has not been revised.

The standard form of order appointing a deputy for personal welfare reflects the provisions of MCA 2005 ss17 and 20 and enjoins the deputy to apply the principles set out in s1 of the Act and to have regard to the guidance in the Code of Practice. It authorises the deputy to make the decisions set out at s17 on P’s behalf if P is unable to make them for themselves when the decisions need to be made. It authorises the deputy to execute or sign deeds or document to give effect to the decisions covered by the PWD order. It provides that the deputy does not have authority to make a decision on P’s behalf if the deputy knows or has reasonable grounds for believing that P has capacity in relation to the relevant matter. It provides that the deputy does not have authority to make decisions set out at s20. The deputy is required to keep records of decisions made and acts done pursuant to the order and the reasons for making or doing them and to submit a report to the Public Guardian if and when required.

There is useful information on the website of the Office of the Public Guardian (“OPG”) entitled, “SD4 How to be a health and welfare deputy (web version)” including information about fees payable to the OPG.

An adult with capacity can make a Lasting Power of Attorney (“LPA”) granting authority to a donee to make decisions about personal welfare matters in their best interests in the event that they lose capacity to do so for themselves. These are now very commonly made. In contrast there are very few PWD appointments each year. An adult without capacity cannot make an LPA but the effects of a PWD appointment and a personal welfare LPA are not dissimilar: another adult is appointed to make decisions about health and welfare in the best interests of a person without capacity to make those decisions for themselves. The wording of the MCA 2005 and the Code of Practice discourage PWD applications. It is understandable that adult autonomy should be jealously guarded. Assigning personal welfare decisions to another adult removes autonomy in relation to hugely important matters from P. Hence the principles set out at MCA 2005 s16(4).

However, put bluntly, someone with Ruby’s level of cognitive functioning will never have capacity to make any decisions about her personal welfare other than at a very rudimentary level. She might express a dislike of a particular experience or enjoyment of another, but she cannot, and never will be able to, understand consequences of decisions such as where to live, what care package is best for her, or whether she should have a particular medical intervention or an admission to hospital. Appointment of a deputy would not take away autonomy from Ruby because she cannot exercise autonomy in relation to anything except the most basic activities and needs. I would not view the appointment as being restrictive of Ruby’s freedom or right to self-determination.

I cannot ascertain Ruby’s wishes and feelings about the application but I am sure she unconditionally trusts her mother. The views of her close family members and those who care for her professionally (at least those about whose views I have evidence) unanimously support the application and view the proposed appointment as being in Ruby’s best interests. This is not a case where there is any conflict of views within the family or those concerned with Ruby’s welfare.

Ruby needs decisions to be made about her personal welfare and health frequently and rapidly. She has complex needs and therefore would benefit from someone speaking up for her who understands those needs and is attuned to Ruby.

The person who is most in tune with Ruby’s wishes and feelings is her mother who is also the person most committed to ensuring that Ruby’s best interests are met.

Ms Parr is uniquely placed to make decisions about Ruby’s residence and day to day care in her best interests. It is accepted by all that her professional background as a Nurse, and the knowledge she has built up over the years, including working with others through Ruby’s Fund, has given her deep insight into her daughter’s complex health and welfare needs.

Decisions about Ruby’s health and care are made daily but there have also been and are likely to continue to be, important health and welfare decisions to be made on her behalf about her residence, the organisation of her care regime, the administration of respiratory support, the need for resuscitation, management of seizures, and the need to be admitted to hospital. Specifically there is a stream of important decisions to be made originating in the key decision of where Ruby should live. If Ruby moves to a specialist care provider, then her mother’s 24 hour care will cease. Others will take up the daily and nightly caring role that Ms Parr has fulfilled. But they will not have her knowledge and expertise about Ruby’s complex needs. It is also likely that Ruby will need input from other carers and healthcare professionals and Ms Parr will not have the ability she has now, whilst Ruby is at home, personally to ensure that key information is passed on to the right people at the right time.

The appointment of Ms Parr as Ruby’s PWD would not be for a single decision. Whilst I must apply the statute and the principle that a decision of the court is to be preferred to the appointment of a deputy to make the decision, this appointment would not be solely for the purpose of one decision, but rather for a series of associated decisions as well as the daily decision-making that will be required for Ruby.

Naturally, not all adults without capacity and with severe disabilities, who have significant daily care needs, need a PWD. But Ruby’s particular history and circumstances, combined with her likely change of residence and therefore carers, mean that a constant voice in decision-making will be to her advantage.

Collaborative working amongst those involved in her care, including her mother, will continue but I accept Ms Parr’s account of the gaps and failings in provision and communication, which are likely to continue. It may be naive to think that families such as Ruby’s always deal with well-informed, well-resourced, fully trained professionals who know the disabled and incapacitous person well and are capable of understanding their complex needs.

Although there is unanimity amongst those concerned with Ruby’s welfare about the proposed appointment, conflicts about Ruby’s best interests in relation to health and welfare decisions have arisen throughout her childhood and are likely to continue in her adulthood. I wish to stress that whilst Ms Parr has had to be assertive and persistent at times, she has not been unreasonable. Indeed all involved in this case have agreed that Ms Parr has not only sought to serve Ruby’s best interests but she has also achieved that goal. However, as disagreements arise it would be too burdensome to expect them to be resolved by the Court on each occasion.

It is one thing to be an informal advocate for a young adult with complex needs and another to be their court-appointed deputy. As Ms Parr has already experienced, the former status can be overlooked or even disregarded. The views of a deputy may not always prevail but they cannot be ignored.

Ms Parr told me that the specialist care provider with whom it is hoped Ruby will be able to reside has asked her for evidence of her deputyship. They want to know that they can turn to her for any best interest decisions about Ruby’s personal welfare.

Deputyship would not entitle Ms Parr to act as she wishes at all times. She would be under an obligation to act in Ruby’s best interests. The appointment order is clear as to what she has authority to do and what she does not have authority to do. There are checks and balances in the system, including the role of the OPG. Appointing Ms Parr as Ruby’s PWD would not be akin to signing away Ruby’s rights.

I have no doubt that Ms Parr will seek to work collaboratively with carers and professionals, including medical professionals, in Ruby’s best interests, as she has done in the past. Appointment as PWD should ensure that she is always included in best interest meetings including when they are held by a statutory body or provider who has not previously been involved with Ruby, as might well happen if she moves residence next year.

Appointing Ms Parr as Ruby’s PWD will provide Ruby with consistency when many services are stretched, experience a high turnover of staff, and cannot guarantee a consistent approach themselves. This is a reality for many carers and those they care for.

Hayden J made very clear in Lawson, Mottram and Hopton (above) that there is no presumption against appointment of a PWD. A PWD is not needed merely because a child with complex needs has become an adult. It is unlikely to be appropriate if there is a single significant decision to be made. In most cases the appointment will not be required, but in some it will. Here, there is likely to be a series of decisions to be made about Ruby’s health and welfare. When Ruby was a child and Ms Parr had parental responsibility, service providers have sometimes struggled to make swift or appropriate decisions for Ruby’s health and welfare and Ms Parr has been at hand to prompt, cajole or insist on Ruby’s behalf and in her best interests. In the first few months of Ruby’s adulthood Ms Parr has experienced further incidents of that kind but without the ability to point to her parental responsibility to give weight to her views. Difficult decisions lie ahead and whilst there may be agreement amongst all involved, there might well not be. It is also in the experience of this Court that public bodies and others responsible for the care of an adult without capacity are anxious about having the appropriate consent for certain interventions or about the propriety of sharing information. It would be invidious to insist upon repeated applications to court to resolve these matters when the Court can be satisfied, as I am, that Ms Parr is uniquely placed to assess and act on Ruby’s best interests in relation to personal welfare decisions as her PWD. On the facts of this case it would not be a restriction of Ruby’s autonomy to make the appointment.

I have had full regard to the principles at MCA 2005 s16(4) but in my judgement, the requirements for making a PWD order are met and I have no doubt that to do so is in Ruby’s best interests. It is supported by all others who are responsible for her care save for the Local Authority which takes a neutral position. I therefore grant the application and appoint Ms Parr as Ruby’s PWD.

Given Ruby has life-limiting conditions and a poor life expectancy, and given the importance of decision-making in her best interests at the end of her life whenever that comes, I shall not restrict the duration of the appointment. It shall be an appointment until further order.

Few of these applications reach Tier 3 Judges. I shall release this judgment to the National Archive in furtherance of open justice and because it serves the public interest. But this judgment is not an inducement to others to make applications for appointment as a PWD in cases where the appointment would not be appropriate. I have applied not departed from Hayden J’s judgment in Lawson, Mottram and Hopton (above).

Ms Willcox, a reporter with ITV Granada, has applied to lift restrictions on naming Ruby as the subject of these proceedings, and on naming members of her family. I granted the application at the hearing and now give my reasons.

Ruby’s involvement in these proceedings is already public knowledge. At a time when there was no Transparency Order in place Ms Parr and Ruby were shown and named on a broadcast on Granada Reports (a regional ITV programme) and their story was picked up by other media outlets. An MP asked a question in Parliament. This interest was about the decision to refuse Ms Parr permission to make her deputyship application. Furthermore, Ms Parr’s battle over the threat to fine Ruby in respect of prescription charges was also the subject of a report on Granada Reports and other media coverage and a question in Parliament. Again, Ruby and her mother’s images and names were used. Ruby’s name is used for the charity, Ruby’s Fund and she is an ambassador for the charity. She is well known in her community and the issue of her mother’s deputyship application has attracted much attention already.

I foresee no detriment to Ruby from her name being published as the subject of the application. Her understanding is at such a low level that she will not be aware. She has an Article 8 right to respect of her private and family life and I must weigh that in the balance alongside the Art 10 rights of others, including her mother and in the context that the starting point of any such consideration about transparency is the open justice principle. Ms Parr fully supports the application to lift the prohibition on naming Ruby and members of her family in the context of these proceedings. She was supported at the hearing by Ruby’s father and adult brother. There was no opposition from the Local Authority (in its written position) nor from the ICB.

The Transparency Order made on 28 October 2025, in standard terms, prohibits identification of the location of where Ruby lives or is cared for. Ms Willcox did not seek to lift that restriction and Ms Parr wanted it to remain in place. But their views were subject to a possible future exception which I have provided for. The order as revised will allow the naming of a place of care for Ruby only if certain criteria are met and with an opportunity provided for other relevant persons to object at the appropriate time. Ms Parr was content with that solution which I was satisfied struck the right balance of rights and respected the open justice principle whilst protecting Ruby’s best interests. Ms Willcox was in court at the hearing and made submissions for which I am grateful.

Accordingly, there is no prohibition on naming Ruby as the subject of the deputyship application or Ms Parr as the applicant but presently her addresses – where she resides and is cared for – may not be identified. The Transparency Order will continue until eight weeks after Ruby dies or sooner order.

It was a delight to have Ruby in my courtroom and inspiring to learn of her life and the devotion to her of her family, in particular of Ms Parr. Her energy and commitment to fight Ruby’s corner, time and time again, is truly impressive. She has sacrificed a great deal in her drive to do what is best for her daughter. She has also helped many others through Ruby’s Fund. Evidence put before me included glowing tributes from different individuals within the healthcare, social care, and charitable sectors. Ruby is fortunate to have been born into this family and to have so much love, care, and support given to her. I wish her and the family the best for the future.