Blood tests
49. Ms D complains the Trust did not carry out endocrinology blood tests that were requested in March 2018 and July 2019. She believes the Trust’s failure to take R’s bloods led to her thyroid being undertreated.
50. The Trust recognised in its February 2020 complaint response that a request for assistance to take R’s blood tests was made in July 2019 but did not arrive at the LD team’s office until December 2019. However, it said clinical staff considered the blood tests were not urgent and that R would not come to any harm if they were not done before the next appointment in March 2020. The Trust also recognised in its November 2020 complaint response that the March 2018 blood test request could have been communicated more clearly.
51. Ms D told the Trust she understood that, according to NICE’s ‘Thyroid Disease: assessment and management’, blood tests should be considered every four to six months until after puberty and then once a year.
52. However, the guidance Ms D refers to was introduced in November 2019. We therefore needed to consider what guidance was in place prior to November 2019, and whether the Trust acted in line with this guidance.
53. Our Adviser explained that prior to the 2019 NICE thyroid guidance, the relevant guidance was the BTA’s ‘UK guidelines for the use of thyroid function tests’. The BTA guidance states that whilst a dose is being changed, blood tests should be conducted every two to three months and, once the TSH level is stabilised, blood tests should be taken annually. For children on Levothyroxine, blood tests should be taken every three to six months until growth is completed.
54. Levothyroxine is a medicine used to treat hypothyroidism. TSH is the hormone released by the brain, whilst T4 is the hormone produced by the thyroid gland in the neck.
55. Our Adviser explained that, whilst the BTA had published the guidelines, the general practice taken when assessing and testing patients was clinically driven. Therefore, some clinicians may have identified that it was clinically appropriate to deviate from the guidelines, in certain circumstances and where the clinical evidence showed that it was in the patient’s interests to do so. This is because clinicians may decide, based on their experience, to make patient centred decisions on the best course of action.
56. With this in mind, we understand the BTA guidance was intended to be used in conjunction with GMC’s ‘Good Medical Practice’, section 15, to make clinical decisions that are in the best interests of the patient. This means that clinicians should make decisions in line with the BTA guidance, and if they decide to deviate from those guidelines, they should clearly document why they have done so.
57. Our Adviser explained that R’s 2017 blood test results show they were in normal range. However, as R had not yet reached puberty, it was important blood tests were taken every four to six months to manage her thyroid function until she had reached puberty, in line with the BTA guidance. At that point, it would have been appropriate and in line with the BTA guidance to test R’s blood to check her thyroid function every year.
58. Therefore, whether R’s blood test results were within normal range in 2017 or not, the Trust should have ensured blood tests were taken every four to six months as R had not reached puberty yet. This includes taking the blood tests that were requested in March 2018 and July 2019, and as appropriate in the intervening period.
59. We have therefore considered the Trust’s reasons as to why the blood tests were not carried out.
60. The March 2018 letter from the Paediatric Endocrinologist to R’s GP requesting blood tests, states ‘I have asked for some blood tests to be undertaken to monitor LH, FSH and oestradiol whenever R is next having bloods done […]’.
61. We can see the Trust acknowledged in its complaint response that the March 2018 letter requesting the blood tests should have been clearer in stating that the blood tests for the above hormones should be undertaken at the next clinic appointment. The letter was a clinic letter to R’s GP and did not state who the Consultant had asked to undertake the blood tests, and the Trust was unable to clarify this in its response. There is also nothing in R’s records that clarifies who was responsible for taking R’s blood tests, in what type of clinic and when that clinic would be held.
62. We agree that the request for blood tests to be carried out was not clear as the letter did not state when and by whom the bloods should be taken by. GMC ‘Good Medical Practice’ section 21 sets out that such letters and other records should be clear as to what an organisation is requesting and who is responsible for any actions. Our ‘Principles of Good Administration’ also state that public bodies should communicate effectively, using clear language that people can understand.
63. We consider the Trust’s 2018 request for blood tests was unclear and therefore amounts to a failing in communication.
64. We also note that between March 2018 and July 2019, the Trust did not explore further whether R’s bloods had been taken or whether they were due. In July 2019, when the Paediatric Consultant reviewed R, they documented in the clinic letter it has been a ‘few years since we managed to do bloods’. However, no reference was made to the blood tests from March 2018 being outstanding.
65. We understand the Paediatric Consultant made a new request that R have blood tests taken in a clinic letter to the LD team dated 31 July 2019. It requested the LD team contact the family to arrange the blood tests. The LD team says it did not receive this letter until December 2019, at the same time that R’s GP emailed it to also request blood tests.
66. The Trust explained in its complaint response that the letter was sent through its internal post system and whilst it has been unable to ascertain the exact reason why there was such a delay, it believes it was because the letter had the incorrect address on it.
67. We recognise that mistakes can be made and post can go missing. However, the Trust had an overall responsibility to ensure that the post was delivered to the right place, and to ensure that any oversight or error could be identified and put right. Sending the letter to the incorrect address was not in line with GMC guidance section 19, which states documents (including clinical records) must be clear, accurate and legible. The Trust had an overall responsibility for ensuring that R got the clinical care it had recognised she needed, and that did not happen here.
68. We can see that the Paediatric Endocrinologist Consultant became aware by October 2019 that the blood tests were outstanding, and it was noted during the November MDT meeting that the Consultant was under the impression the LD Team was trying to resolve the issue. However, the LD Team was not present at the meeting and so it remained unaware of the need for blood tests.
69. We understand that once the LD team was notified the blood tests were outstanding, it took steps to move forward by first considering R’s mental capacity to consent to the administration of the tests.
70. When a patient turns 16, they become subject to the Mental Capacity Act 2005. This legislation affects all people who lack the ability to make some or all decisions for themselves.
71. We understand from our Adviser that any clinician treating R would need to determine whether she had capacity to consent to the blood tests. Capacity decisions are made on a case-by-case basis, as a person may have capacity to consent to some interventions but not to others.
72. Our Adviser explained that GMC ‘Professional Standards for Doctors – 0-18 years: guidance for all doctors’ sets out in the introductory section the need for clinicians to exercise professional judgement, act in good faith and in the interest of the patient. GMC ‘Good Medical Practice’ states in the ‘Professionalism in Action’ section that good doctors should ‘do their best to make sure all patients receive good care and treatment […] whatever their illness or disability’.
73. We can see the Trust acted in line with this guidance and thoroughly considered the relevant factors when considering whether R had the capacity to consent to blood tests. We are not critical of the Trust for taking the time to explore this matter carefully, and we recognise that this is an important but often complex responsibility.
74. We can see the LD team made contact with R’s Paediatric Consultant about whether she had capacity to consent to blood tests and had discussions with the MHA/MCA team about what they would need to consider when reaching a ‘best interests’ decision.
75. We can also see that R’s Nephrologist confirmed in February 2020 that she did not have capacity to consent to the decision and asked the Paediatric Consultant what the risks were of R not having the blood tests, to which the Paediatric Consultant confirmed that there is reported puberty but R had not started her menstrual cycle. They did not confirm what the risk was of delaying the blood tests, so the Nephrologist raised the question again.
76. Following this, the LD Team made contact with the Paediatric Consultant. The Paediatric Consultant confirmed that it would consider whether the blood tests were necessary during the April 2020 appointment, after R had the required ultrasound.
77. Our Adviser explained that where questions of capacity are raised, teams such as the LD team will often co-ordinate between departments to ensure consistency. That being said, the Trust should have facilitated the capacity assessment and consideration of R’s best interests when it referred her for the blood tests, as she had turned 16 the year prior. This is supported by GMC ‘Good Medical Practice’ which states in section 15 ‘You must provide a good standard of practice and care. If you assess, diagnose, or treat patients, you must: • adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological… factors) • promptly provide or arrange suitable advice, investigations or treatment where necessary’.
78. We understand this consideration could have included the views of Ms D as R’s mother, and healthcare professionals such as R’s GP and her Nephrologist, who were in agreement that R did not have capacity, with the LD Team providing their view pragmatically. This would have been in line with NICE guidance ‘Care and Support of people growing older with learning disabilities’ on supporting people growing older which sets out in section 1.1.9 ‘Health and social care practitioners should listen to, actively involve and value key members of the person’s support network in the planning and delivery of their current and future care and support […]’.
79. We can see the Paediatrics department considered the information available, and that R did not have capacity, but reached a decision that the blood tests could wait until at least April after R had undergone the ultrasound and they had reviewed her and the results of the ultrasound.
80. However, the decision the Trust reached was not supported by the evidence available at the time, which showed that R had not had a blood test since 2017 and required bloods taking every three to six months. This was also not in line with NICE guidance to which Ms D referred in her complaint to the Trust, which had since been released in November 2019 and advises in section 1.4.5 that ‘For children aged 2 years and over and young people taking Levothyroxine for primary hypothyroidism, consider measuring FT4 and TSH: • every 6 to 12 weeks until the TSH level has stabilised (2 similar measurements within the reference range 3 months apart), then • every 4 to 6 months until after puberty, then • once a year.’
81. At the time the clinicians were considering whether R should have the blood tests, it was unclear to them whether R had reached puberty, and therefore blood tests needed to be taken every four to six months, as set out in the NICE guidance. By April 2020, R had not had a blood test in three years.
82. With this in mind, we have found a failing here as we cannot see the Trust acted in line with either the BTA guidance or the NICE guidance, once introduced.
Follow up action on blood test
83. Ms D complains the Trust did not chase up or coordinate between departments to allow the tests to take place, and did not allow the Nephrologist to carry out the tests. Ms D believes the Trust’s failure to coordinate between the departments contributed towards the delay in R having her bloods taken.
84. As we have set out above in paragraph 64, we cannot see from R’s records that she was reviewed following the blood test request made in March 2018.
85. GMC ‘Good Medical Practice’ section 15 sets out clinicians should promptly ‘provide or arrange suitable advice, investigations or treatment and, where necessary, refer a patient to another practitioner when this serves the patient’s needs.’
86. We cannot see from R’s records that the Trust chased up or contacted any departments to enquire about the blood tests that were requested in March 2018. We can see that the plan was for R to be reviewed in six months’ time. However, there is no evidence that shows this review took place. Had this review taken place, we consider on the balance of probabilities it likely would have been identified that the blood tests were outstanding. We consider the Trust’s lack of action to coordinate or enquire about R’s blood tests was not in with GMC guidance.
87. When R’s second referral for blood tests was made in July 2019, we can see from her clinical records that her Paediatric Endocrinologist wrote to R’s social worker in October 2019 explaining that they would not be attending the November MDT. They explained that due to R’s distress, they had been unable to obtain any bloods or carry out any scans that they had planned and so did not have an up-to-date position on R’s hormonal status. The plan was to review R in six months’ time, hoping to have some results at hand at that time. Their understanding was the LD Team was supporting R with this.
88. We can see that the consultant was informed in September 2019 the scan could not go ahead and Ms D was speaking with the LD team because of the issues that occurred.
89. We understand the departments consulted on whether R had capacity and what way forward would be in her best interests, as well as the different approaches that could be taken to help alleviate the stress the necessary procedures were causing R.
90. We can see from the records that two of the consultants involved in R’s care were in discussion about the urgency of the blood tests. We can see that R’s Nephrologist offered to take R’s blood tests in February, but this did not go ahead. The records show R’s GP raised concerns with the Trust in March about the lack of blood tests and other issues and asked the Trust whether it would be helpful for the main professionals involved in R’s care to meet and try and co-ordinate to resolve the issues.
91. Shortly after this, Ms D and R began shielding because of the COVID-19 pandemic, which meant that it was not possible for R to attend the hospital for blood tests. We can see further discussions took place between the professionals involved in R’s care. A letter dated May 2020 indicates the LD team was reluctant to restrain R.
92. We understand from our Adviser that at the point R was prescribed Levothyroxine she was going to require frequent blood tests to check and manage her thyroid levels until she had reached puberty, in line with the BTA and NICE guidance mentioned in the previous section of this report. Additionally, at the point R turned 16 her capacity needed to be considered when it came to taking blood tests and carrying out other tests.
93. NICE guidance ‘Care and support of people growing older with learning disabilities’ sets out in section 1.4.5 ‘Health and social care practitioners should work with the person and those most involved in their support to agree a plan for the future.’
94. Section 1.4.6 sets out what planning for the future should involve. This includes, but is not limited to, considering input from family members, carers or advocates as appropriate, and involving a practitioner that has a good working relationship with the patient and communicates well with them.
95. As explained above, we cannot see from R’s records that a plan was put in place to ensure that she received frequent blood tests, as required. This was not in line with NICE guidance.
96. Moreover, there was no plan of action put in place by the Trust to consider R’s capacity, despite it being aware that she was approaching 16 years old.
97. When the Trust began to consider R’s capacity and what would be in her ‘best interests’, the evidence shows there was a lack of co-ordination between the departments to reach a timely conclusion.
98. Our Adviser explained that the clinical records show ‘best interest’ decisions had been made for R in the past when she had previously had blood tests and the same principles could have been considered and same approach followed, rather than delaying the tests. Our Adviser highlighted that a considerable amount of time was spent considering a capacity assessment for a blood test which was previously done routinely.
99. NICE guidance ‘Care and Support of people growing older with learning disabilities’ explains in section 1.5.8 that clinicians must ‘ensure that everyone involved in the person's care and support shares information and communicates regularly about the person's health and any treatment they are having, for example by holding regular multidisciplinary meetings. Involve the person in all discussions.’
100. Section 1.5.9 goes on to say ‘Primary and secondary healthcare teams should identify at least 1 member of staff who develops specific knowledge and skills in working with people with learning disabilities and acts as a champion, modelling and sharing good practice. Use the expertise of people with learning disabilities to ensure the champion understands their needs.’
101. We can see the LD team was involved in discussions but there was no mechanism or plan in place which confirmed one person was responsible for ensuring R’s treatment continued in line with her needs.
102. There was also an opportunity for the Trust to communicate with R’s GP to see whether they could provide any assistance with taking R’s bloods. We understand that in May 2020, the GP attended R at her home and took her bloods without the need to restrain her and whilst using a needle. We understand that R was shielding because of COVID-19; however, it is unclear why the Trust did not consider this an option prior to R’s Nephrologist stepping in and contacting R’s GP.
103. Having considered the above, we have found there was a lack of coordination between the departments to ensure R received the blood tests she required. The Trust’s failure to consider and plan for R’s future care meant that when it did consider her capacity and what would be in her ‘best interests’ there were avoidable delays in ensuring she received the care she needed.
104. Furthermore, we recognise Ms D believes the LD team blocked the Nephrologist from carrying out the blood tests.
105. We can see from R’s records she had an appointment with the Nephrologist in February 2020 where he offered to take R’s bloods.
106. The Nephrologist acknowledged R did not have capacity but also considered the renal function tests were not clinically urgent and, instead, noted it was the need of the Endocrinology team to check her thyroid levels. The Nephrologist concluded that the offer to take R’s bloods still stood, so we have not seen anything to indicate the LD team blocked or prevented him from conducting or arranging for the tests.
107. We understand from Ms D that she believes the LD team stopped the blood tests because of a post she put on social media. We have carefully considered the evidence available to us, and we cannot see any evidence within the clinical records that suggests this was the case or was a factor in any clinical decision making.
108. What we can see from the evidence is that the blood tests did not go ahead because the Endocrinologist said they considered that the blood tests could wait until the end of April. On this basis, we cannot say the blood tests were blocked.
109. What we can say, however, is that the Trust did not coordinate between departments or chase up the blood tests. We have found a failing here and have considered the impact below.
Impact
110. We have carefully considered the impact of the failings we have identified above. To do this, we have also consulted R’s clinical records from her admission to Sheffield Children’s Trust in July 2020 where she was diagnosed with an undertreated thyroid. Ms D told us that the Trust’s failure to take and co-ordinate R’s blood tests meant she did not get the blood tests she needed when she needed them, which left her thyroid undertreated.
111. Ms D also explained that having to proactively try to resolve the issue has caused distress for her and taken away from time she should have been able to relax or enjoy with her daughter.
112. R is a vulnerable individual who is unable to communicate and verbally report symptoms, including any pain and discomfort she is experiencing. This means we are not able to explore R’s own account of her experiences in thinking about how any errors may have affected her. Therefore, we have had to carefully consider the impact the lack of blood tests had on R based on the other information available to us. We asked our Adviser to consider what difference, if any, it would likely have made to R’s wellbeing and symptoms if she had undergone blood tests following the requests in March 2018 and July 2019, based on the clinical evidence available.
113. Our Adviser explained that R’s blood test results in April 2017 were within normal range. However, the blood tests taken in May 2020 show that the TSH hormone was at 6.5, with normal range being 0.5 to 4.5, which meant R’s dose of Levothyroxine would likely have been increased if this had been identified earlier.
114. We understand from our Adviser that due to R being non-verbal, it is very difficult to say what symptoms she was experiencing and how they may have improved if the dose had been increased. Our Adviser explained that often physical symptoms are related to the T4 level which, based on the May 2020 blood tests, were within the upper half of the normal range. The range for T4 is 10.0 to 20.0. Our Adviser went on to explain that a patient’s blood tests may be outside of the normal range, but they may still experience few or no symptoms.
115. This means we cannot make a decision on the balance of probabilities as to what difference, if any, it would have made to R’s health and wellbeing if the Trust had carried out blood tests between March 2018 and May 2020 because there is no evidence available to indicate R was experiencing a physical impact as a result of delayed identification of her high TSH levels. We note that, as it was the TSH hormone that was high, and symptoms are often related to the T4 hormone, it may be that R had no symptoms at all and so there may have been no physical impact caused by the delay.
116. We recognise that the only way to ascertain what symptoms, if any, a patient in these circumstances experienced had would be to ask them questions. Unfortunately, this is not possible here. This is not to say there was no impact, only that we cannot reach a view as an independent third party that R did or did not experience any pain or discomfort as a result of the mistakes recognised above.
117. However, we recognise this has left Ms D with the frustration and distress of not knowing whether her daughter was in discomfort or pain, and we consider this impact to her was avoidable.
118. We also recognise the stress Ms D experienced having to co-ordinate and communicate with the Trust to ensure her daughter receive the blood tests she so clearly needed, stress which evidently increased as delays continued. We have therefore considered an appropriate remedy for her experience.
119. To decide on a level of financial remedy, we review cases where the person has experienced a similar injustice, along with our Severity of Injustice scale, set out in our ‘Guidance on Financial Remedy’. Following this review, we consider Ms D’s injustice falls into level two on our Severity of Injustice scale. Cases which fall into level two on our scale are cases where a person has experienced distress, worry and annoyance for a period of 1-2 weeks to approximately six months.