Kent Community Health NHS Foundation Trust

4. Mrs R complains about aspects of the care and treatment provided by Kent Community Health NHS Foundation Trust in January 2024, for her mother, Mrs J.

She says that clinicians from the HTS:

carried out an initial assessment of Mrs J incorrectly on 19 January failed to respond appropriately to the worsening condition of Mrs J on 20 and 21 January actioned a hospital avoidance strategy from 19 to 27 January instead of initiating a ‘Treatment Escalation Plan’ placed Mrs J on the end-of-life care pathway during this period without Mrs R’s knowledge or consent

Mrs R says this meant that her mother was not admitted to hospital and was denied appropriate medical interventions and timely treatment, which led to her untimely death on 30 January 2024. She tells us this added distress, made the bereavement more difficult and the grieving process more protracted for her.

5. Mrs R is seeking an apology, acknowledgement of the failings in her mother’s care, and service improvements to ensure hospital avoidance strategies are not inappropriately utilised.

Mrs J was an 84-year-old lady with Parkinson's Disease and dementia. Mrs J's daughter, Mrs R, looked after her at home and had lasting power of attorney for health (LPA). This means that Mrs R was allowed to make decisions about medical care and treatment on her mother’s behalf.

If someone is being cared for at home, their GP has overall responsibility for their care. It is often the case that community nurses visit the person at home as well.

Mrs J’s GP put ‘just in case’ (JIC) medications in place on 15 December 2023, but these were never collected. These were anticipatory medicines prescribed for symptom control at the end of life, to be kept at home to be used, if needed, to manage distressing symptoms quickly.

Mrs J was under the care of the HTS and other health care professionals from 19 January 2024 until she sadly died at home on 30 January. She had previously been discharged from the Community Rehabilitation Team as it deemed she had no rehabilitation potential.

A community nurse visited Mrs J at home on 19 January and was concerned due to her reduced consciousness and low temperature. Several days prior to this, a urine test had revealed that Mrs J had a suspected urinary tract infection (UTI) and indications of potential e-coli. E-coli is a bacterial infection.

The nurse suggested a hospital assessment was needed and called paramedics who assessed Mrs J and suspected cold sepsis. Cold sepsis, also known as ‘sepsis without fever’, is a severe infection characterised by a low body temperature.

6. Hospital admission was discussed with Mrs R due to the deterioration in Mrs J’s condition and the above concerns, but Mrs R agreed to referral to the HTS instead. The HTS provides short term, urgent care to cover the acute phases of illness. Acute illnesses are conditions that arise suddenly and, in this context, require immediate medical attention.

The HTS aims to keep patients from being admitted to hospital when such an admission could be detrimental to them by treating any reversible conditions in the home. Reversible conditions are medical or health-related issues that can be treated successfully, allowing the individual to return to their baseline level of health.

A Trainee Advanced Clinical Practitioner (ACP) from the HTS visited later that day and carried out an assessment.

Mrs R called the HTS on 20 January to report her concern that her mother had not been seen by a doctor, was not improving, had taken no fluids and had had a nosebleed.

7. An ACP called back and discussed the findings and decisions from the assessment on 19 January as well as Mrs R’s concerns of 20 January, including Intravenous (IV) fluid therapy, JIC meds, home visits and how Mrs R was caring for her mother. IV fluid therapy (often called a drip) is a way of replacing fluids in the body by giving them straight into the bloodstream.

8. Mrs R called the HTS the next day to report her concern that her mother was not alert and still had taken no food or fluid.

9. Community nurses visited Mrs J that day and mentioned to Mrs R that that Mrs J could be at end of life, spoke to her about IV fluids only being given in hospital and reaffirmed that hospital avoidance was appropriate for Mrs J.

10. HTS staff did not visit Mrs J between 22 and 28 January. However other healthcare professionals did attend over this period. They are not involved in this complaint.

On 27 January Mrs R spoke to the HTS and asked for IV fluids and antibiotics treatment for her mother. Antibiotics are medicines which are used to treat or prevent some types of bacterial infection.

11. On 28 January a GP from the HTS visited and administered IV fluids to Mrs J to be reviewed next day. The GP did not prescribe antibiotics.

12. The following day a GP from the HTS visited Mrs J and clarified that there was no sign of active infection and reiterated the risk of IV fluid therapy to Mrs R.

13. Mrs J sadly died at home the next day.

Before we decide if we should investigate a complaint in more detail, we look at a few different factors. We consider whether there are signs the organisation concerned has got something wrong. We do this by comparing what did happen with what should have happened. If what happened fell far short of what should have happened, we call this a failing. We also look at whether what happened had a negative impact on the person in question. If we think it did, we will go on to consider what, if anything, the organisation has done to try to put things right.

If we think there was a failing, and that this had an impact that has not been put right, we will usually investigate in more detail.

Initial assessment by HTS on 19 January

Mrs R told us that the Trainee ACP from the HTS made multiple errors and incorrect assumptions when carrying out the initial assessment of her mother. Mrs R queried the validity of a Glasgow Coma Scale (GCS) score. The GCS a tool used to assess and calculate a patient’s level of consciousness.

The Trust explained its view that the assessment was appropriate and made by a suitably experienced and qualified nurse. It says the nurse undertook thorough assessments and made appropriate clinical decisions regarding Mrs J’s care based on her presentation at that time.

A Trainee ACP is a fully qualified and registered healthcare professional who is undergoing additional advanced clinical practice at master’s degree level. This was, therefore, a suitably qualified person to do the assessment.

The assumption Mrs R refers to is, primarily, that her mother was approaching the end of her life. The evidence from the professionals involved in Mrs J’s care is overwhelming that, sadly, this was correct.

The other is that her mother was ‘bedbound’ at the time of the assessment. Bedbound means a person is unable to move without assistance and spends much of their time in a bed or chair. This may be due to frailty, illness, declining health or injury. It is not considered to be a permanent condition. This description matches Mrs J’s presentation as per the clinical records and is, therefore, accurate.

There is not enough evidence to allow us to comment meaningfully on how Mrs J’s GCS was measured, but there is evidence that her condition was gradually deteriorating and her level of consciousness had reduced. It is, therefore, more likely than not that it was right to assess her GCS as below 15.

Turning to the assessment itself, the Code says that nurses should accurately identify, observe and assess signs of normal or worsening physical and mental health in the person receiving care.

Our adviser told us the nurse carried out a thorough clinical assessment, including a full systemic review. This involves a screen for symptoms in other body systems which could have been relevant to the primary presenting complaints (in this case, reduced consciousness and low temperature) and could also identify symptoms that the patient or carer has forgotten to mention. During this review, the nurse noted that Mrs J had a reduced oral intake, appeared to bedbound and seemed comfortable.

Our adviser confirmed that the nurse carried out a thorough physical examination and recorded physiological observations, which were normal except for temperature. The rate of respirations was normal, but the breathing pattern was irregular. Temperature remained low at 36.1 (considered to be the lower end of normal) but had improved from 32.8 and 34.6.

The nurse also noted the impression that Mrs J had a resolving UTI. This was based on a positive urine test but with normal inflammatory markers measured by CRP. CRP is c-reactive protein, which measures inflammation in the body. Although it is not simply related to infection, it can be used to monitor the body’s response to an existing infection.

The nurse also noted the impression that Mrs J was at the end of life. This conclusion was based on a gradual clinical deterioration, for example, becoming bedbound, reduced consciousness, reduced oral intake, low temperature, and irregular breathing pattern.

Given the thoroughness of the assessment, we are satisfied that it was done in line with the Code. We fully appreciate that Mrs R wanted more to be done for her mother. The HTS’s role is to prevent hospital admissions where they would be detrimental and to provide short-term treatment for acute, reversible conditions. At that stage, Mrs J was approaching the end of her life, did not have an acute, reversible condition, and it appears that sadly, there were no appropriate clinical interventions available to her from the HTS.

Response by HTS on 20 and 21 January

17. Mrs R told us the HTS failed to respond appropriately to the worsening condition of Mrs J on 20 and 21 January. She was concerned her mother had not been seen by a doctor, was not improving and was not alert and still had taken no food or fluid. Mrs R believes that her mother was denied appropriate treatment.

The Trust explained as Mrs J was comfortable and there had been no change in Mrs J’s presentation, she did not require a visit over these two days, nor any additional medications or treatment. It noted that the community nurses continued to visit and appropriate care and support were in place for Mrs J as well as ‘safety-netting’ for Mrs R. Safety-netting means information shared with a patient or their carer, designed to help them identify the need to seek further medical help if their condition fails to improve, changes, or if they have concerns about their health.

The role of the HTS is to provide short-term treatment for acute, reversible conditions. This means that, when speaking with Mrs R on these days, HTS staff should have judged whether a reversible acute illness was likely and to identify any clinical changes that would alter the care plan in place. The HTS should have responded appropriately to any change in Mrs J’s clinical presentation.

During the telephone call on 20 January the HTS triaged Mrs J and said a visit was not necessary. The phone call on 21 January was an update, noting that Mrs J’s clinical condition had not changed so, again, no medical input from the HTS was needed. It was also noted that community nurses had visited Mrs J on this day and had referred her for support with personal care from the rapid response team.

Our adviser confirmed that these were appropriate assessments as Mrs J was comfortable and had no urgent acute clinical needs. They explained that the worsening Mrs R observed in her mother was, sadly, part of the natural end of life process.

With this in mind, we are satisfied that the HTS assessed the situation appropriately, leading to a decision not to provide any further input. We know this is not what Mrs R wanted and that she strongly feels more should have been done for her mother. We have considered the actions of the HTS against the backdrop of the role it is intended to provide. Although, Mrs R rightly observed her mother to be deteriorating, this appears to have been a natural progression of the end-of-life stage, and did not indicate an acute problem or need for input from the HTS.

Hospital avoidance strategy/end-of-life care pathway

Mrs R complained that the HTS used a hospital avoidance strategy instead of initiating a ‘Treatment Escalation Plan’ and placed her mother on an end-of-life pathway over this period without Mrs R’s knowledge or consent. She feels that this prevented admission to hospital and appropriate treatment for her mother.

The Trust said that HTS staff made appropriate clinical decisions based on Mrs J’s best interest, clinical guidance and best practice. It said the HTS thoroughly reviewed Mrs J and treatment was given when appropriate. It said there was no indication that hospital admission would have been more appropriate.

It explained also that numerous clinicians across multiple services, including Mrs J’s GP, saw indications that the deterioration was the start of Mrs J reaching the end of her life and that that staff did try to explain this to Mrs R on multiple occasions.

Mrs J was referred to the HTS on 19 January to avoid hospital admission, which, according to the records, appeared to have been in line with her own and Mrs R’s wishes. As previously noted, the role of the HTS is to prevent hospital admissions where such an admission could be detrimental. Therefore, it is a fact that the service aims to keep people out of hospital where appropriate.

When the HTS nurse assessed Mrs J on 19 January, they explained to Mrs R that Mrs J appeared to be end of life and advised collection of the JIC medication.

There is evidence in Mrs J’s health records that the HTS (and other practitioners) communicated the prognosis and care plan for her mother and made it clear that hospital admission and other interventions were not recommended at this stage of Mrs J’s life. They explained to Mrs R during consultations that her mother was deteriorating and showing signs that she was nearing the end of her life.

We have not seen any evidence that there was a change to Mrs J’s clinical presentation or needs or that Mrs J had any acute, reversible clinical needs during this time period and, as such, we are reassured that no medical intervention was needed.

The aim of involving an HTS is to prevent unnecessary hospital admissions. Many people at the end of their lives prefer to see out their days at home and many hospital admissions for these patients can and should be prevented. We recognise how difficult this must have been for Mrs R to accept, but the overwhelming evidence is that her mother was, sadly, at the end of her life at this point. It seems admission would likely have been detrimental for Mrs J, as she was frail and likely to have been susceptible to hospital acquired infections so it would not have been appropriate to move her to hospital for treatment.

The HTS was not providing end of life care for Mrs J in the way Mrs R appears to believe it was. Its role is to prevent a hospital admission and to treat any reversible conditions. It does not provide end of life care. End of life care is typically provided by community nurses, hospice staff and the GP. We hope this information gives Mrs R at least some comfort that her mother’s care was managed appropriately and that there was no clinical need, at that stage in her life, for the HTS to provide treatment for her.

1. We have carefully considered Mrs R’s complaint about Kent Community Health NHS Foundation Trust (the Trust) regarding her mother’s care under the West Kent Home Treatment Service (HTS).

We consider that the HTS assessed Mrs J appropriately. It did not put her on an end-of-life pathway as Mrs R believed, and it was right for the HTS to aim to allow her to stay at home during her final days. We recognise that Mrs R wanted her mother to stand the best chance of living. Sadly, at the time of these events, it was apparent that Mrs J was approaching the end of her life.

2. We have, therefore, decided not to investigate in more detail or take any further action. We explain the reasons for our decision in this statement.

3. We hope our decision provides Mrs R with some reassurance about the care her mother received.