SAR Ruth

1. Purpose of a Safeguarding Adults Review

Under section 44 of the Care Act 2014 a Safeguarding Adults Board (SAB) must arrange for there to be a review of a case involving an adult in its area with needs for care and support (whether or not the local authority has been meeting any of those needs), if there

·       is reasonable cause for concern about how the SAB, members of it or other persons with relevant functions worked together to safeguard the adult,

·       and the adult has died,

·       and the SAB knows or suspects that the death resulted from abuse or neglect (whether or not it knew about or suspected the abuse or neglect before the adult died).

Each member of the SAB must co-operate in and contribute to the carrying out of a review under this section with a view to

(a) identifying the lessons to be learnt from the adult’s case, and

(b) applying those lessons to future cases.

The primary purpose of this SAR will be to draw together the critical learning, identify any systemic issues and learn lessons for future practice, outlining any necessary actions to be taken. It will also consider what the relevant agencies involved did well in mitigating risk of harm to Ruth, but also what might have been done differently that could have prevented harm/risk of harm.

2. Introduction to the Safeguarding Adults Review

The Torbay and Devon Safeguarding Adults Partnership (TDSAP) commissioned a safeguarding adults review (SAR) into the death of Ruth, aged 18, who died at home on the 14th of August 2020, five months into the COVID-19 pandemic, and less than a year after transitioning from children’s services to adult’s services. As the cause of death was understood, no inquest was required.

As Ruth had a learning disability, she met the criteria for a review of her health and social care after her death under the national Learning Disabilities Mortality Review (LeDeR) programme.

On reviewing the information available to them, the LeDeR team submitted a Safeguarding Adults Review (SAR) referral to the TDSAP on 01st February 2022, as they believed that agencies could have worked more effectively together to support Ruth and her family.

The TDSAP considered this referral at its Safeguarding Adults Review Core Group (SARCG) meeting, agreeing that the pre-requisites for a mandatory safeguarding adults review under Section 44 of The Care Act 2014 had been met, in line with the criteria outlined above.

The terms of reference were agreed in November 2022, and the Lead Reviewer was appointed in February 2023 to work with relevant agencies to identify areas of learning to improve partnership working and to minimise the possibility of a reoccurrence, as per s.44(5) The Care Act.

Due to extenuating circumstances, including the pandemic and other factors, a number of SARs were paused, both locally and nationally. SAR Ruth was one of those reviews, and the Torbay and Devon Safeguarding Adults Partnership acknowledge the significant delay, recognising the distress this will have caused the family and would like to thank them for agreeing to meet with the Lead Reviewer at a time that was difficult for them. We do not underestimate the impact losing a much loved daughter had, but we are most grateful for the contributions they made to inform this review, and the way in which they shared some very personal memories.

The Lead Reviewer is a Senior Designated Nurse for Safeguarding Children, has written IMRs for Serious Case Reviews, and been involved in numerous complex investigations in their 12 years in the role. There are no direct links with any of the agencies who have participated in this review process.

Ruth was a much loved daughter and sister of 5 siblings. Her mother and stepfather have played a significant part in this review, sharing some personal memories that have enabled the Lead Reviewer to understand who Ruth was. In addition, they have provided some valuable and at times very candid insight into how services provided impacted on them as a family unit.

3. Introducing Ruth

Ruth was born in September 2001, and she lived at home with her mother, stepfather and 5 younger siblings. Ruth was a white British young woman, born with cerebral palsy, spina bifida, severe scoliosis, epilepsy, global developmental delay and was registered partially sighted. In later years she required feeding via a Percutaneous Endoscopy Gastrostomy (PEG) tube.

As a child, Ruth was almost always smiling. Ruth’s parents recalled fondly her ‘wicked sense of humour’. She is described as having had a very big smile that would light up her face when anyone approached, particularly if she recognised them. Ruth was nonverbal and had some visual impairment, and although she was not able to use Makaton[1] effectively, she is described as having had brilliant communication and being able to let people know what she needed, making simple choices over her clothes and what she wanted to wear on a given day. Although Ruth never walked and used a wheelchair, she loved the hydrotherapy pool and other sensory/water based activities. Ruth was popular in school, she had a magnetic personality, was a very determined young lady, very giving with a calming effect on people. She loved animals, particularly riding her horse Timmy.

Ruth attended a local authority maintained special school for pupils with special educational needs from September 2012. She transferred to their college provision when she reached 16 years of age.

As the onset of COVID-19 led to a national lockdown, Ruth began to self-isolate at home with her family and was at home when she very sadly passed away in August 2020.

[1] Home (makaton.org)

4. Review methodology

The TDSAP do not prescribe a single model or methodology for undertaking a SAR. There is guidance on a range of methodologies to support the TDSAP on choosing the most appropriate option for producing a review that maximises the learning from a tragic event such as the death of Ruth.

All agencies were initially asked to complete a Single Agency Summary Report (also known as an Appendix 2) outlining their involvement and providing an overview of events from when Ruth turned 18 years of age on 27th September 2019. This timeframe was subsequently expanded back to when Ruth turned 16 years of age in 2017 to understand more thoroughly the preparations that agencies made for Ruth to move, or transition, from children’s health and social care services to adult’s health and social care services.

Following the receipt of Appendix 2s, all agencies submitted an Individual Management Report (IMR) to understand more fully the breadth of services that were involved with Ruth. Some agencies provide more than one IMR as they provided a number of services to Ruth, and we have been given access to the information that the LeDeR team has collated.

An IMR is intended to provide a review of decisions, actions taken, and services provided to a person, who is the subject of a SAR. The aim of the IMR is to review the circumstances at the time; and to develop an open critical analysis of both individual practice and organisational policy and practice, to see whether the case indicates that changes can and should be made.  If the need for change is indicated, the report Lead Reviewer can identify how those changes will be brought about.  If a change in policy and practice has already occurred, the report Lead Reviewer must document and evidence this thoroughly.

A practitioner event was considered, bringing together professionals who had been involved with Ruth and contributed towards her care, to enable exploration of the context within which the agencies were working, the impact on how effectively the agencies worked with other agencies, and how they supported those within their care and their families. Given the time lapse it was felt this was not appropriate, however the Lead Reviewer engaged with individual professionals to seek further clarification on points identified within the IMRs as needed.

5. Overview of key lines of enquiry

Analysis of the referral, Appendix 2s and IMRs identified the following key lines of enquiry for the purposes of this review:

·       The effectiveness of the handover or transition from children’s services to adult services in regard to social care, health care and the Special Educational Needs and Disability (SEND) system. This will include consideration of the multi-agency Educational Health Care Plan (EHCP) and how it supported the management and identification of Ruth’s needs and the handover of care; and application of the Mental Capacity Act (2005)[2] after Ruth turned 18.

·       The impact of the COVID-19 pandemic on the agencies, the established care and monitoring arrangements of the agencies involved, and review of the plans from when Ruth began to self-isolate

·       The support offered to the family during both the transition of care and the COVID-19 pandemic. Underpinning this will be the views of the family, together with consideration of the application of a trauma informed practice approach, and Principle 2 of the Mental Capacity Act (Individuals being supported to make their own decisions)

[2] Mental Capacity Act (2005) (legislation.gov.uk)

6. Effectiveness of the handover and transition from adult to children’s services

Ruth was a young person with significant and complex medical needs and a learning disability. She and her family had been supported by a range of paediatric health professionals and she was attending a special school for children and young people with special educational needs. Her care was being provided by her parents at home, and another family member was providing breaks when needed. School were a significant source of support to the family. Ruth was defined as a Child in Need[3] due to her disability and had an allocated social worker from the Children’s Disability Team.

As part of the transition from children’s to adult’s services, Ruth was entitled to an initial assessment to consider funding eligibility for NHS Continuing Healthcare[4], often referred to as CHC. An initial checklist assessment is undertaken by a health professional or social worker, then a decision is made whether eligibility is met for a full assessment by a multi-agency team of professionals. This assessment was key to ensuring her complex needs were being appropriately met, and provision of care was in place as she transitioned.

Towards the end of 2018, there was evidence within the health records of early planning for the CHC assessment, at which point Ruth’s mother had consented to the process, and a positive checklist was accepted in December 2018. Ruth was then allocated to a CHC Nurse for a full assessment to take place in March 2019. This assessment was delayed, and the next reference to the assessment was in June 2019. It is noteworthy that the decision to pursue this assessment was made at a Child in Need (CIN) meeting which Ruth’s parents had not attended. It is unclear how the CHC process was subsequently shared with parents, as although it was agreed that the children’s social worker would follow this up, there is no record in their chronology of this CIN meeting.

Following the initial consent from Ruth’s mother to progress the CHC assessment, a key turning point was an apparent discussion between the school and parents, in which they were advised that if they pursued a CHC assessment, and health agreed to funding Ruth’s care, they would not be able to access the ongoing educational provision of their choice for her. This appears to have prompted Ruth’s parents to withdraw their consent for the CHC assessment to be undertaken. At this point there is evidence that professionals were having email discussions about the withdrawal of consent and recognised the need for careful consideration of how to address this. It was not possible to understand the context of this conversation, which is disappointing given the significant impact it had.

The social care assessor records a very long and sometimes difficult telephone conversation with parents, where the CHC assessment and provision of services was discussed. This record would suggest there was confusion from the parents perspective as to how the assessment had been triggered, and the social care assessor worked hard to explain how and why the CHC checklist had been completed, citing the legal duty to ensure the funding of services was appropriate to need. Ruth’s parents firmly believed they should have a choice about future provision for her, which should not be dictated by how it is funded.

Discussion of this case in professional supervision identified there was understanding that Ruth’s parents were reluctant to engage with the CHC assessment due to a perception of services that would subsequently be available. Despite this recognition, the discussion focused on the CHC assessment and not how work could be done with the parents to help them understand the importance of maintaining engagement with health professionals given Ruth’s vulnerabilities.

A positive outcome of the supervision was an escalation to seek advice from the Disability Lead. This prompted for the first time very robust recommendations about how professionals should view the disengagement through the eyes of Ruth’s parents. At a time of significant change, they were struggling to navigate the complex world of adult health and social care, leading to misconceptions of the intentions of adult services. It was noted that this was further compounded by previous experiences of health and social care professionals which left the parents feeling wary and sceptical. Although the parents had Ruth’s best interests at heart, the Disability Lead clearly articulated that disengagement at this point would place Ruth at unnecessary risk.

It is at this point, some 5 months after the parents withdrew consent for the CHC assessment, that professionals were finally planning a meeting to discuss concerns and formulate a plan for building positive relationships with the parents.

It was refreshing to observe a change in approach by the professionals, who had been recording reports of parents ‘refusing to engage’ and becoming frustrated, angry and defensive when challenged. During our meeting, Ruth’s parents reflected that very often they believed that their protectiveness of her was misinterpreted as volatility or aggression. The Lead Reviewer can only conclude that there was a missed opportunity to engage parents at an earlier opportunity when consent was initially withdrawn. There should have been an immediate multi-agency meeting with the professionals who knew Ruth and her family best, to agree how the purpose of undertaking the assessment could be revisited with the parents, to lay out options in a clear and concise way, with the aim of rebuilding parent’s confidence in the system designed to support their daughter.

The Lead Reviewer notes it is a further 8 weeks before the professionals meet as planned. The record of this meeting available to the Lead Reviewer is poor, with the only outcome being to invite Ruth’s parents to a best interest meeting. It was disappointing that there was yet again a missed opportunity to agree how the professionals present could work together to monitor the ongoing health needs of Ruth; rather it focused on the CHC commissioning issues. Additionally, there was no recorded action plan to identify how the professionals would support Ruth and her parents to manage her complex health and social care needs. Disappointingly there was no plan to reconvene the best interest meeting.

Following this meeting, records indicate that the Decision Support Tool (DST) was completed on an ad hoc basis based on information shared at the professionals meeting, and without any input from the parents. The records available to the Lead reviewer contradict each other in terms of who completed the DST. The guidance clearly states that “the individual concerned, and their representative(s) should be given reasonable notice of completion of the DST to enable them to arrange for a family member to present”. Whilst the Lead Reviewer acknowledges that parents had withdrawn their consent, it is difficult to understand why this was done prior to the planned best interest meeting, which was a potential opportunity to positively re-engage Ruth’s parents in the process. This was appropriately challenged by the social care assessor, who rightly pointed out that the family could consider that the DST had been completed without their knowledge. She also advised she had been trying to broach the subject of the CHC assessment with parents, and the act of completing the DST based on information from a meeting, which was not identified as the platform to complete the tool, completely undermined her relationship with the parents and further underpin their level of distrust in professionals.

It is unfortunate that at this time the COVID-19 pandemic arrived in the UK, and the country went into lockdown. This prevented any opportunity to have a meaningful face to face conversation with Ruth’s parents. It should be acknowledged that despite this, the social care assessor did persevere in engaging them in discussions over the telephone, however the focus of the discussion as recorded appears to be the funding and commissioning issues, rather than taking an opportunity to highlight the benefits for Ruth in having a full assessment of her health needs to ensure they were met effectively.

The issue of the CHC assessment was concluded in a date being set for the completion of the DST, and Ruth’s parents being given an opportunity to attend this meeting (albeit virtually). Despite this invitation giving clear explanations as to the reason for the meeting, they did not attend, and the DST was subsequently completed without their involvement.

It is the Lead Reviewer’s view that what should have been a relatively straight forward process of assessment, despite Ruth’s complex needs, became unnecessarily drawn out and complicated by a focus on the commission and funding arrangements, rather than the importance of a review of health needs to ensure they could be effectively met. Consequently, there was a significant delay in provision of services. There can be no doubt that the significant delay in engaging in meaningful discussions with Ruth’s parents to understand their reason for withdrawing consent created barriers and breakdown in relationships between the parents and professionals.

The NICE Guidance NG43[5] provides recommendations and overarching principles for professionals and practitioners involved in the planning of transition of care from children’s to adult’s services. It is further underpinned by the NICE Quality Standard[6], which sets out 5 Quality Statements when considering transition of care.  Additionally, the SEND Code of Practice[7] clearly sets out how professionals across education, health and social care should support children and young people with special educational needs or disabilities prepare for adult life, including transition to adult health services, adult social care and higher education. All are clear that planning for transition should start as early as possible, but certainly by 13 – 14 years of age.

The first indication that the need for transition planning should be considered for Ruth was a referral by children’s social care to the adult learning disability service when she was 14 years of age. Although practice standards may have been met in principle, this referral is not recorded within the adult social care records and did not result in early sharing of information or planning to underpin a gradual process of transfer into adult focused services. Ruth was allocated a social care assessor 7 months before her 18th birthday. From this allocation it was 8 weeks before practitioners from children and adult social care were able to meet to begin a professional handover, and a further 3 weeks before both social workers met with the family.

The delay in allocation within adult social care may have significantly reduced the time available to draw together key professionals involved in Ruth’s care to undertake the Care Act[8] assessment. The Care Act 2014 places a duty on local authorities to conduct transition assessments for children where there is a likely need for care and support after the child reaches 18 years of age. There is a view that waiting until the young person is 17 or 18 will avoid duplication of assessment where needs may change. Conversely delaying the assessment can mean that the local authority will not have time to put services in place thus the benefit to the young person may be reduced, and the duty in relation to ‘significant benefit’ is not fulfilled.

The assessment for Ruth was commenced 4 months before her 18th birthday and completed just before she turned 18 years of age.

The assessment appeared to be robust, having consulted with children’s services, making appropriate risk assessments, and identifying ongoing needs for Ruth. The social care assessor, in accordance with the Social Care Standards[9] of ‘promoting the rights, strengths and wellbeing of people, families and communities’ and ‘establish and maintain the trust and confidence of people’ worked closely with Ruth’s family gaining their perspective and insight throughout the assessment. Despite this positive engagement with the family, it is not clear whether an advocacy service was ever considered for Ruth. Although she did have her family members, this may have been an opportunity to ensure objectivity when considering best interest decisions for Ruth.

An Education, Health and Care Plan (EHCP) review is designed to ensure that all professionals involved, the young person and family/carers agree the plan is still effective. The review explores achievements and challenges and is an opportunity for everyone to identify any changes that need to be made. The SEND Code of Practice clearly states:

‘Local authorities must ensure that the EHC plan review at Year 9, and every review thereafter, includes a focus on preparing for adulthood.’

There is evidence that preparing for adulthood was considered as part of the EHCP reviews from 2017, with the social care assessor attending subsequent reviews when Ruth turned 18. The 2017 review captures the importance of Ruth and her family having access to the information and support they need to make informed decisions about future provision, post 16, 18 and 19. The 2018 review confirms Ruth’s lack of capacity, and includes evidence of preparation for adulthood discussion, centred around educational options for Ruth. The 2019 review is the first time that best interest decision making is identified as a need, together with the need for transition planning post school provision, and consistent adult services support until Ruth’s transition in 2021.

What can be seen from these reviews is evidence of positive engagement between professionals involved in Ruth’s care and her parents, with some planning for her future provision, and consideration of goals toward some independence within Ruth’s capabilities. The reviews demonstrated how well the school knew and understood Ruth’s needs, and the positive relationship they had with her parents. It is difficult to extrapolate however whether the reviews were effective in the handover of care. Sadly, Ruth’s parents reflected that they believed the reviews were a waste of time and acted as a tick box exercise, not adding value to Ruth’s experience. It is not clear whether this was understood by the professionals involved.

Following the EHCP review in 2019 the social care assessor undertook a Mental Capacity Act (2005) (MCA) assessment, which confirmed that Ruth lacked the capacity to make decisions about her care needs. This assessment should have prompted application of Principle 4 of the MCA, whereby a person has been assessed as lacking capacity then any action taken, or any decision made for or on behalf of that person, must be made in their best interests (principle 4). The Disability Lead had previously pointed out the importance of having a very sensitive discussion with parents to ensure they understood that once Ruth reached 18 years of age, they would no longer be able to make decisions on her behalf, and that the MCA would need to be applied with best interests decisions being made for the benefit of Ruth. It is not clear to the Lead Reviewer whether this discussion ever took place.

The person who has to make the decision is known as the ‘decision-maker’ and normally will be the carer responsible for the day-to-day care, or a professional such as a doctor, nurse or social worker where decisions about treatment, care arrangements or accommodation need to be made. Although there did not appear to be a formal decision about who would undertake this role, it appeared to default to the social care assessor, and there are multiple examples of discussions and information sharing with school Ruth attended to explore her ongoing care needs.

Simultaneously to this transition planning, and towards her 18th birthday, Ruth’s care was being transferred from paediatric services within secondary health care to adult services. A key appointment was held with parents and both paediatric consultant and consultant physician, the school nurse and other specialist team members in what was described as being “really helpful for handover purposes.” It was noted within this appointment that a preparing for adulthood social worker had been allocated, although she was not present. This appointment appears to have been concluded with a very thorough assessment of Ruth’s needs, and a clear plan being developed for the coming months. This was shared with the social care assessor and GP.

In their report ‘From the Pond into the Sea[10]’, the CQC highlighted the crucial role that GPs have as the single service that does not change as a result of reaching adulthood, and that they should be involved at an earlier stage in planning for transition. Whilst the various services being accessed by Ruth in secondary care shared appointment letters with the GP, there is no evidence they played an active part in the transition process for Ruth.

The social care assessor had contacted the community matron to discuss transition of care from the school nurse to the community nursing team. In a short discussion the social care assessor agreed to share school contact details and advised although there was extensive information about the handover from children’s services, it would be valuable to liaise with the school nurse directly regarding Ruth’s nursing needs and related issues. It is unclear from the records available whether this discussion ever took place.

It is noted that the community matron had subsequently made an appointment to visit Ruth’s parents at home, however they were not in as planned when she called. When she was able to talk to Ruth’s mother on the phone, the community matron reports mother as being verbally aggressive and not wishing to see the nurse as they had a hospital appointment anyway.

Once again it is difficult from the records available to understand how the transfer of care from school nursing to community nursing was conveyed to Ruth’s parents, and thus what they understood the role of the community nurse to be. Gaining parent’s trust during an uncertain period such as transition of care is key to sustaining effective patient care. This is underpinned by the Nursing & Midwifery Council’s Code of Conduct[11] which states nurses should ‘Practise effectively’ through:

·       working with colleagues to preserve the safety of those receiving care

·       sharing information to identify and reduce risk

It is clear that although significantly delayed, in the months running up to Ruth’s 18th birthday, some transition planning was in place. Sadly, this planning appears to have been in various silos, with a lack of an effective, joined up approach between health and social care professionals. Quality Statement 3 of the NICE Quality Standard recommends that young people who are moving from children’s to adult’s services have a named worker to coordinate care and support, before, during and after transition.

Despite Ruth’s highly complex medical needs, this coordination seemed to default to the social care assessor. There is no doubt that the social care assessor undertook this role to the best of their ability, but it was neither their role nor area of expertise. This lack of coordination helps understand the family’s view that the transition of care for Ruth was a ‘scary time’ for them, when they were unclear about what services would be available for Ruth and what support would be available to them.

It is the Lead Reviewer’s view that earlier, joint transition planning would have better supported information sharing between all professionals involved in providing care for Ruth, and provided the opportunity to build relationships with Ruth, her family and key professionals prior to the transition.

[3] Children Act 1989 (legislation.gov.uk)
[4] NHS continuing healthcare decision support tool guidance – GOV.UK (www.gov.uk)
[5] Transition from children’s to adults’ services for young people using health or social care services (nice.org.uk)
[6] Transition from children’s to adults’ services (nice.org.uk)
[7] SEND code of practice: 0 to 25 years – GOV.UK (www.gov.uk)
[8] Care Act 2014 (legislation.gov.uk)
[9] Professional standards – Social Work England
[10] CQC Transition Report_Summary_lores.pdf
[11] The Code: Professional standards of practice and behaviour for nurses, midwives and nursing associates – The Nursing and Midwifery Council (nmc.org.uk)

7. The impact of the COVID-19 pandemic, leading into the support offered to Ruth’s family during both transition of care and the COVID-19 Pandemic

The COVID-19 pandemic was one of the biggest challenges faced by the health and care system in living memory[12]. All agencies working with vulnerable children, young people, adults and their families and carers were required to undertake risk assessments to identify those most vulnerable and develop prioritisation frameworks. Clearly this will have looked different in each agency, but the overall aim was to ensure that the needs of the most vulnerable continued to be met where the ability for face to face contact was significantly compromised.

Alongside this prioritisation framework was the impact of COVID-19 on staff delivering the care and services, with a significant reduction in staff resources. This was due directly to COVID-19 illness, but also a redeployment of staff to COVID Response work that was being prioritised.

At the end of March 2020, the government advised in the region of 2 million individuals who it considered to be clinically extremely vulnerable to COVID-19 that they should shield at home for 12 weeks, to protect themselves from the virus. Given her vulnerability and complex medical needs, Ruth was required to shield, and stopped attending school, remaining at home with her family during the national lockdown. The family were sent a letter by the local acute hospital trust advising of this requirement to shield, as per government guidelines. This letter included what to do if there were any concerns regarding Ruth’s health needs and who to contact.

The key agencies providing care and support to Ruth and her family should have made a clear plan as to how they would maintain communication with the family and ensure oversight of and attention to Ruth’s medical needs.

Although some routine hospital appointments were put on hold during COVID, Ruth’s parents had planned telephone consultations with the consultant physician and were able to access more specialist advice in relation to her PEG (feeding) tube. It was well reported that Ruth often took less food or supplements orally whilst at home, and she had been weighed regularly at school, with school nurse oversight. As Ruth was not in school, there was no easy method of monitoring her weight at home, though initially parents had no concerns about weight loss. They were actively seeking support from the Consultant Physician and dietician, who were able to offer supplements and advice on how to monitor Ruth’s weight. Further into lockdown, her parents did report concerns to the dietician about weight loss, and a plan was captured within the records for the nutrition support nurses to provide further training to them with a new feed regime for Ruth. Although captured within the record, Ruth’s parents stated as part of this review that no plan was relayed to them. Sadly, it was shortly after this plan that Ruth passed away. Appointment letters regarding the ongoing advice and support provided to Ruth’s parents were shared with the GP and the school nurse, as would have been routine practice. They were not shared with school or the social care assessor, who were the two professions having the most contact with Ruth’s family.

Adult Social Care had identified Ruth as being in the highest category of need in relation to her social care needs, though this seemed to focus on the fact she would require 24 hour placement should there be a breakdown in care by the family. There was no record of a contingency plan of how the family would be supported, nor Ruth monitored whilst she was shielding. Throughout the lockdown period, contact between the social care assessor and the family appeared sporadic and unplanned; of the 7 contacts, 3 were initiated by the family. The social care assessor did maintain regular communication with the continuing health care team and was working tirelessly behind the scenes to progress and resolve the issue of funding for Ruth once she returned to school.

The GP practice had identified Ruth as a high risk COVID patient, but again it is not clear how this informed any contingency plan for regular contact or support whilst she was shielding. A high risk patient review was undertaken in May 2020, the context of which is unclear, and it was undertaken by an administrator, not a clinician.

Ruth was not seen by the surgery in the 18 months preceding her death. The medication review process may have been an opportunity to make contact, however these were suspended during the COVID-19 pandemic, as were many of the routine follow up appointments, including learning disability and epilepsy. The GP did receive letters from clinic appointments; however, this did not result in any meaningful discussion between professionals to explore support options, rather it would appear they were simply filed.

Ruth’s school recorded that she was shielding with her family from March, and Ruth’s tutor made weekly contact with them via telephone from that point. There was a script provided for these contacts, which included asking about health and well-being and more practical issues like having enough food. This was good practice and would have prompted discussions that some families may have felt uncomfortable about initiating. The tutor was proactive and tenacious in following up unsuccessful calls, and there was only one occasion of an unsuccessful contact. Records demonstrate appropriate information sharing with the social care assessor, which towards the end of lockdown focused on school provision. The conversations recorded demonstrate a positive and trusting relationship between school and Ruth’s parents, with topics of conversation ranging between the new baby’s arrival to home learning resources to the provision of food vouchers, ensuring children eligible for free school meals continued to have access to meals even though they were not in school. This points to the key role that school had in Ruth’s life in the provision of holistic care and support even during the COVID-19 pandemic. Unfortunately, the weekly contacts ceased just before the increased concerns about Ruth’s reduced food intake were being reported. It is unclear whether the school’s in-depth knowledge of Ruth would have been a positive influence in addressing this concern. The ending of the weekly contacts appears to be in line with the schools closing for the standard school holiday.

A welfare check was carried out via a telephone call to the family by an occupational therapist within the health learning disability team in April 2020. This included ensuring they had a COVID-19 hospital passport to assist hospital staff should Ruth require contact with inpatient services. A plan was made to undertake a check in phone call every two to three weeks from this contact, there was no further contact made between this and the notification of Ruth’s death.

There is evidence that key agencies offering care and support to Ruth and her family had made risk assessments identifying Ruth as extremely vulnerable during the COVID-19 pandemic. There are examples of some very robust contingency plans being implemented, with regular family contact and information sharing, and there are equally examples of these contingency plans being more of a tick box exercise without any meaningful intervention for Ruth and her family. It is clear there was a lack of coordination and an absence of regular multi-agency discussions to ensure seamless oversight during the pandemic. Ruth and her family had shifted from a world that had been full of daily contact at school and regular face to face contact with a variety of professionals, to existing in a world that presented a very real fear of a virus that was killing thousands each day. Reduced contact with professionals at this time can only have increased anxiety for them and Ruth, who clearly loved being at school alongside her peers and teachers. The pandemic certainly contributed to a lack of follow up within routine health reviews and appointments. The Lead Reviewer suspects that although this would not have been unique during a time of significant challenge for health and care services, it is impossible to say that this had a direct correlation with Ruth’s death.

Spending time with Ruth’s parents offered the Lead Reviewer a unique insight into what their experience had been caring for an extremely vulnerable young person with complex medical needs. Their love for Ruth shone through in all of our conversations, and there can be no doubt that they were the experts in her care and needs. The social care assessor noted that:

‘a protective factor for potential risks has been that Ruth’s parents genuinely love their daughter and want her to continue to enjoy family life with them. They have a strong sense of family, and of wanting to keep them together.’

Conversely, due to her complex health needs, there was no doubt that they needed support in meeting those needs, and it is difficult to imagine how they were able to navigate the multiple demands and expectations placed upon them by the range of professionals involved. There were a number of medical appointments for Ruth, and the Lead Reviewer notes that when there was a pattern of non-attendance, professionals worked together to facilitate those appointments taking place in school, which improved medical oversight and supported parents attendance. This was good practice, demonstrating a clear drive by the professionals involved to deliver personalised care to Ruth and her family.

Ruth’s mother shared that sometimes the meetings were very long, and because of this her perception was that professionals lost interest. The Lead Reviewer is saddened to think that this would be a parent’s experience, where any such meeting should be person centred and focused on their needs. Parents and carers place their trust in a multitude of professionals to support them to make the right decision. They need to have confidence that those professionals are working effectively together.  Consideration should be given as to the purpose of meetings, particularly for individuals with complex needs,

Ruth’s parents reflected that they were young parents, suddenly with the care of a baby with significant needs. There were times when they ‘didn’t get it right’, but instead of receiving the help they needed, they often felt judged and criticised. This is evidenced in the language sometimes used by professionals, blaming language labelling them as ‘difficult’ or ‘aggressive’. Often, as was the case for Ruth’s parents in relation to the CHC process, lack of understanding resulting in ‘difficult’ behaviour was viewed by professionals as non-compliance, who might have taken a more compassionate approach to effectively engaging with the parents.

The Lead Reviewer notes within the referral form to TDSAP for this review, reference to a view that ‘it was unlikely Ruth’s mother had capacity to understand.’ It is not clear where this view originated. Additionally, there was a statement within a health record that mother had ‘possible learning difficulties.’ Again, it is not clear on what this assumption was based. The Lead Reviewer found good evidence in records from various professionals confirming there had never been any question about mother’s capacity, and this was further corroborated in the Lead Reviewer’s meeting with the parents. The Lead Reviewer can verify that Ruth’s mother was incredibly articulate, engaging and well able to express her views and feelings. It is the Lead Reviewer’s opinion that such records are unprofessional and can be misleading without any evidence to support the view.

[12]  The Road To Renewal: Five Priorities For Health And Care | The King’s Fund (kingsfund.org.uk)

8. Lead Reviewer’s Appreciation

The Lead Reviewer was pleased to have the opportunity to meet with Ruth’s mother and stepfather as part of this review and wishes to thank them for their honest insight and willingness to share very private and personal thoughts and reflections. Gaining an understanding about their experiences first hand has provided a very unique and key perspective to the Lead Reviewer, offering a richness to the narrative that we could not have had without their contribution.

Appendix 1 – table of recommendations

1	The ICB should review the newly developed PFA Pathway for Transitions from Childrens Continuing Care to Adult Continuing Healthcare, in particular seeking assurance of the following elements:
1a	All relevant partners can provide assurance that professional understanding of the CHC process and funding implications on service provision is widely understood and embedded in practice.
1b	NHS Devon can provide assurance that a robust quality assurance process is in place for the completion of Decision Support Tools.
2	In order to prevent barriers to engagement and enable sufficient time for effective transition planning of appropriate services, all relevant partners should review existing transition policy and guidance, and provide assurance to the Partnership that;
2a	Professionals undertaking the checklist assessments are confident in helping families and carers understand the CHC process.
2b	Transition planning is commenced at the earliest opportunity in line with best practice, resulting in robust, early information sharing between relevant agencies.
2c	All relevant partners involved in the transition hold a joint meeting with family/carers to introduce themselves and explain their role, giving family/carers an opportunity to contribute to and inform the handover process as far as is reasonably practicable. This is particularly key from a health perspective where the young person transitioning has complex medical needs.
2d	Where a young person who is transitioning from children’s to adult’s social care, an early professional’s meeting is held in line with Local Authority duty, to confirm who the lead will be for that transition. This meeting must also identify the appropriate health lead to work collaboratively with the LA Lead where the young person has significant and complex health needs. This should be clearly recorded and relayed to the family of that young person.
2e	Consideration is given as to whether the key children’s lead for the young person will remain involved, even if not holding responsibility. This will ensure information sharing is effective and the new plan is effectively progressing or embedded. This consideration should be recorded in terms of the rationale for the decision.
3	Where consent for an initial CHC checklist is not given or withdrawn, there is an immediate discussion with the parents/carers to understand their reasons for this. Best practice would dictate this is done through a face to face meeting. If this is not possible, professionals should plan a meeting as soon as is reasonable to plan how they will approach the disengagement and support the parents/carers to understand the associated risk. All such meetings/discussions including decisions made should be clearly recorded.
4	Assurance must be sought from Children’s Social Care that in any child in need meeting, actions from previous meetings are followed up to ensure they are complete. If they are not complete, the rationale and any barriers should be recorded, and solutions identified.  Where parents or carers are unable to attend a meeting, the chair of the meeting must ensure that an update is provided to them within 48 hours of the meeting.
5	The DCC 0 – 25 Team should give consideration as to how progress of actions set at an EHCP annual review can be monitored more formally throughout the following year.

Appendix 2 – Glossary of Terms

Torbay and Devon Safeguarding Adults Partnership (TDSAP)	TDSAP provides strategic leadership to all partner agencies working across Torbay and Devon regarding their statutory requirement to safeguard in line with The Care Act 2014. It acts as the key mechanism for agreeing how partners work together to safeguard and promote the safety and wellbeing of adults at risk and/or in vulnerable situations. TDSAP coordinates the operational work of partner agencies ensuring it is delivered effectively.
The Care Act 2014	The law that sets out local authorities duties when assessing people’s care and support needs. The main principle is to help improve people’s independence and wellbeing and for care providers and givers to promote a person-centred approach to the care and support they provide.
The Learning Disability Mortality Review (LeDeR)	The LeDeR programme was established in 2015 to support local areas across England to review the deaths of people with a learning disability, to learn from those deaths and put that learning into practice. It aims to improve the standard and quality of care for people with a learning disability.
Safeguarding Adults Review (SAR)	A statutory requirement for Safeguarding Adults Boards/Partnerships.  The purpose is very clearly defined within The Care Act 2014 and aims to promote effective learning and improvement action to prevent future deaths or serious harm occurring again.
Safeguarding Adults Review Core Group (SARCG)	A subgroup of TDSAP, responsible for overseeing the referral & management of SARs across Torbay & Devon
Social Care Institute for Excellence (SCIE)	Seeks to improves the lives of people of all ages by co-producing, sharing, and supporting the use of the best available knowledge and evidence about what works in practice.
National Network of Safeguarding Adults Boards (SAB) Independent Chairs	The Care Act established Safeguarding Adults Boards (SAB) in law. The Care and Support Statutory Guidance that accompanied the Act, set out expectations of those who chair Safeguarding Adults Boards. Where possible the chair should be independent, but this is not a requirement, and the network opened membership to all SAB chairs in 2016, having been set up as a peer support group for independent chairs in 2009.
Percutaneous Endoscopic Gastrostomy tube	A type of feeding tube inserted through the skin of the abdomen into the stomach, allowing nutrition, fluids and/or medication to be given directly to the stomach bypassing the mouth and oesophagus.
NHS Continuing Healthcare (CHC)	Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. For adults this is known as NHS Continuing Healthcare, and can be provided in a variety of settings outside hospital, such as home or a care home.
Mental Capacity Act (2005) (MCA)	The Mental Capacity Act (2005) came into force in 2007. It is designed to protect and restore power to those vulnerable people who may lack capacity to make certain decisions, due to the way their mind is affected by illness or disability, or the effects of drugs or alcohol. The MCA applies to everyone working in social care, health and other sectors who are involved in the support and treatment of people aged 16 and over, who live in England and Wales, and who are unable to make all or some decisions for themselves. The Act is underpinned by 5 key principles. Principles 1 to 3 support the process before or at the point of determining whether someone lacks capacity. Once it is assessed that capacity is lacking, principles 4 and 5 support the decision making process.
Mental Capacity	Having mental capacity means that a person is able to make their own decisions.
Mental Capacity Act assessment	Under the Mental Capacity Act, you are required to make an assessment of capacity before carrying out any care or treatment if you have reasonable belief someone lacks capacity.
Best Interest Decision	Principle 4 of the MCA outlines the requirement that anything done for, or on behalf of a person who lacks mental capacity must be done in their best interests.
Independent Mental Capacity Advocate (IMCA)	IMCAs are mainly instructed to represent people where there is no one independent of services, such as a family member or friend, who is able to represent the person. They are a legal safeguard for people who lack capacity to make specific important decisions including treatment and care options.

 Cathy Hooper
Lead Reviewer