Jake Perry

Chief Medical Officer 
Executive Team 
Birmingham Women’s and Children’s NHSFT 
Steelhouse Lane 
Birmingham 
B4 6NH 

www.bwc.nhs.uk 

Mr H G Mark Bricknell 
Senior Coroner for County of Herefordshire 
BY EMAIL 
C/O Nigel Phillips 
Coroner’s Officer 
coroners@herefordshire.gov.uk 

28 April 2020 

Dear Mr Bricknell  

Re: Jake Perry; Regulation 28 Report to Prevent Future Deaths 

I write in response to your Regulation 28 Report issued to Birmingham Women’s and Children’s NHS Foundation 
Trust on 1 April 2020, following the inquest into the tragic death of Jake Perry.  

We  would  like  to  reiterate  our  sincere  condolences  to  Jake’s  family,  who  sadly  have  lost  a  very  special  young 
person.  

The matters of concern you raised in your Report refer to the variation of Parenteral Nutrition and communication of 
such. Specifically, you are concerned that secure procedures are required in connection with changes to Parenteral 
Nutrition and that consideration should be given to the production of a standard Parenteral Nutrition which is varied 
on specific instructions of the prescribing consultant. I will respond to each of your concerns in turn.  

You are aware that immediately following this incident, the Trust commissioned an investigation into the care and 
treatment we provided  to Jake. Following the investigation of this  incident  a significant amount of  work has been 
undertaken by the Trust to improve our own internal processes. We have ensured that national guidance such as 
that the best practice guidance on Homecare medicines, issued in 2011 and known as ‘the Hackett Report’1, has 
been put into practice. For ease of reference, the relevant sections within the report are reproduced below:  

1 http://media.dh.gov.uk/network/121/files/2011/12/111201-Homecare-Medicines-Towards-a-Vision-for-the-Future2.pdf 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
                                                           
 
 
 
 5.15 Ensure governance arrangements in relation to patient safety state aspects of care for which the following are 

responsible  
• Hospital 
• Homecare Company  
• GP 
• Health professionals  
• Patient  
• Availability of backup advice and support 

5.16 It should explain: 

•  How  will  the  treatment  plan  be  communicated  to  the  patient,  homecare  company,  GP  other  healthcare 

providers.  

• How will the initial prescription and repeat prescriptions be produced, and who will check this prescription in 

the Trust before communicating to the home healthcare company. 

• What level of clinical checking of the prescription and patient will the home healthcare company undertake.  
• How will the clinical and laboratory monitoring be undertaken. 
•  What  are  the  arrangements  for  patient  safety  incident  reporting,  performance  monitoring  and  outcome 

monitoring?  

All these reports should be shared with the Trust and then the NRLS.  
The Trust should have a formal way of reviewing these reports and taking necessary action. 

5.17 The home healthcare company should also provide to the Trust electronic copies of medicines policies, control 

of infection policies, and other policies impacting on patient safety and clinical effectiveness.  

The Hackett Report was written generally, for all medicines delivered by homecare companies and not specifically 
for home Parenteral Nutrition. It has therefore taken some time to agree the details of such arrangements for this 
specialised area. There have been improvements at a national level, such as an agreed national template for the 
initial prescription and improved working with homecare suppliers to identify errors and learn from them.  

Improvements have also been made to the National framework. There is a national review being undertaken on the 
safety  and  resilience  of  aseptic  services,  including  the  production  of  home  Parenteral  Nutrition2.  Birmingham 
Women’s  and  Children’s  NHS  Foundation  Trust  has  submitted  evidence  to  this  review  on  various  aspects  of 
paediatric services including the lessons learnt directly from Jake’s case.  

As you are aware, we have reflected upon Jake’s sad  and untimely death in detail and we have put measures in 
place in an attempt to prevent any recurrence of such an incident. In order to strengthen the measures we have put 
in place locally, the Trust considers that computerised prescription should be used throughout the ordering process 
of PN. However, unfortunately, the Trust is not in a position to effect such a change in the market; the requirement 
for a single format electronic prescription for PN would require a mandate by NHS England. 

PN is an intravenous medication, with more than 50 ingredients and additives, and as such is liable to medication 
errors,  especially  in  paediatric  patients  where  all  the  calculations  are  weight-based.  Computerised  prescription, 
whether  standardised  or  bespoke  to  the  individual  patient,  ought  to  be  used  in  the  ordering  process  of  PN.  We 
therefore  consider  that  computer  assisted  prescribing  software  for  PN  should  become  readily  available,  as  a 
standard  for  all  units  set  out  in  the  national  Home  PN  Framework  as  these  programs  can  save  time,  decrease 
prescription and compounding errors, and improve the quality of nutritional care.  

We have recommended a national standardised electronic prescribing system for Parenteral Nutrition as we noted 
that  there  needed  to  be  improved  communication  between  Trusts  and  suppliers,  specifically  with  clarity  on 
responsibilities. This issue was also highlighted within our RCA.  

2 https://improvement.nhs.uk/resources/call-evidence-pharmacy-aseptic-services-review/ 

 
 
 
 
 
                                                           
 Furthermore,  the  Trust’s  Chief  Pharmacist  has  been  asked  by  the  Chief  Pharmaceutical  Officer  of  England  to 
provide  a  synopsis  of  the  lessons  learnt  in  Jake’s  case  for  pharmacy  professionals  nationally.  There  are 
mechanisms for sharing such learning through a number of networks including the All England Chief Pharmacists’ 
Network, Medication Safety Officer Network and through presentations at local and national professional meetings.  

The findings will also be shared with the National Homecare Medicines Committee who have input into the national 
framework for the procurement of homecare products. The national lead for outsourced medicines has advised the 
Trust on improvements following the incident involving Jake’s Parenteral Nutrition and  will  also receive a  copy of 
the lessons learnt.  

In response to your concern regarding the production of a standard Parenteral Nutrition which is varied on specific 
instructions  of  the  prescribing  consultant,  I  have  discussed  this  matter  with  Dr  Protheroe  and  can  respond  as 
follows; 

There are two Parenteral Nutrition (PN) solutions available for use. Those are a) standard feeding regimens known 
as  All-in-One  (AIO)  or  multi-chamber  bags  (MCB)  which  contain  all  the  required  nutritional  components,  or  b) 
individually compounded mixtures which are manufactured in a suitable pharmacy manufacturing unit and contain 
bespoke nutritional requirements for an individual patient.  

Commercially prepared mixtures of vitamins and minerals are available and will provide well-balanced amounts of 
all essential vitamins and trace elements. These mixtures must be added to individually compounded bags of PN or 
AIO bags under controlled aseptic pharmaceutical conditions.  

Standard PN bags are used for children and young people in hospital on a short term basis only. This is in order to 
reduce the risk of ordering errors, as well as the risk of compounding errors in the hospital pharmacy, which deals 
with many different PN prescriptions on a daily basis. These commercially batch-produced standardised PN bags 
require  an  addition  of  parenteral  multi-vitamins  shortly  before  infusion.  This  is  a  limitation  that  requires  proper 
handling to assure aseptic conditions and to avoid errors and as a consequence is not an option available for home 
use. Moreover, the inclusion of various trace elements may shorten the shelf life of the standard bag. 

Regular use of standard formulations in infants and children requiring PN for prolonged periods (such as those on 
home PN particularly over longer periods of time), may be less than optimal for growth and development and as a 
result, these patients require bespoke formulations of PN, as was the case with Jake.i  

There are a number of reasons why a patient will require individualised PN; 

A] patients with chronic intestinal failure requiring long term home PN (HPN) 

B] particularly where parenteral nutrition is a supplement to oral intake and  

B] children and rapidly growing adolescents on HPN in order to meet their specific nutritional requirements.  

Jake fulfilled all of these three criteria and consequently was prescribed individualised PN.3 

As you heard in evidence provided at Inquest, an adequate supply of micronutrients is essential for patients on PN 
to  prevent  clinical  deterioration.  Specific  patient  related  requirements  for  parenteral  vitamins,  trace  elements  and 
minerals vary among patients depending on their clinical and metabolic status and the need to replace any losses 
or prevent toxicity. It is for this reason that long-term PN patients, who have their PN administered at home, require 
a bespoke formulation rather than a standard preparation.  

3 https://www.bapen.org.uk/85-nutrition-support/parenteral-nutrition 

 
 
                                                           
 
 I hope that this information serves to adequately address your concerns. Jake’s death has had a significant impact 
on staff caring for Jake and we are truly sorry for the errors in processes that led to Jake’s death. Once again, I 
would like to offer my sincere condolences to Jake’s family. 

Yours sincerely 

Chief Medical Officer 

Birmingham Women’s and Children’s NHSFT 

i https://www.espen.org/files/ESPEN-Guidelines/Pediatrics/ESPGHAN_ESPEN_ESPR-guidelines-on-pediatric-
parenteral-nutrition-Standard-versus-individualized-parenteral-nutrition.pdf 

2018 ESPGHAN/ESPEN/ESPR guidelines on pediatric parenteral nutrition: Standard versus individualized 
parenteral nutrition

Trust Head Quarters 
County Hospital 
Union Walk 
Hereford 
HR1 2ER 

Tel: 

01432 364000 

Ref: DM/VJ 

Date: 1 June 2020 

Mr Mark Bricknell 
Herefordshire Coroner 
Town Hall 
St Owen Street 
HEREFORD 
HR1 2PJ 

Dear Mr Bicknell 

Re: Jake Thomas Perry 

Thank you for granting me a 14-day extension to allow me to respond to your regulation 28 report to 
prevent future deaths with regard to Jake Perry. I am sorry that the current situation with regard to 
Coronavirus has delayed this important communication. 

From the outset, I would like to extend my deepest sympathies to Jake’s parents and family. 

Jake suffered from a rare gastrointestinal disease, which rendered it necessary for him to receive 
nutrition through an artificial feeding line. He was under the care of the gastroenterology team at 
Birmingham Children’s Hospital and the children’s community nursing team in Hereford. He had direct 
access to the children’s ward in Hereford. 

On Saturday 15 July, he attended the children’s ward at Wye Valley Trust because he had been unwell 
with vomiting and constipation. Jake suffered these type of episodes quite often but usually managed to 
cope with them at home. In addition, he complained of increasing weakness of his legs. 

After examination, an initial diagnosis of Guillain Barre Syndrome was made and the paediatric 
neurologist at Birmingham Children’s Hospital contacted. Following the review by second paediatric 
consultant later in the day Jake’s low folate result was noted and the team planned to discuss this with 
Jake’s gastroenterology team at Birmingham Children’s Hospital. 

The next day Sunday 16 July, Jake continued to deteriorate with increased weakness. The neurologist at 
Birmingham Children’s Hospital was contacted again and both teams were still of the opinion Jake was 
suffering from Guillain Barre Syndrome. 

     Printed on 100% recycled paper to support our commitment to the environment and careful use of resources. 

      Glen Burley, Chief Executive 

  Russell Hardy, Chairman 

 Jake was reviewed again on 17 July in Hereford when it was felt that some of his signs and symptoms 
could represent a nephrological problem and the plan was made to discuss with the renal team at 
Birmingham Children’s Hospital. Jake underwent a lumbar puncture on 18 July following which the 
consultant team at Hereford contacted the neurological team at Birmingham Children’s Hospital for a 
further opinion. Later that day Jake became increasingly unwell. He required intensive resuscitation in 
our intensive care unit and theatre and because of a concern that he may have suffered damage to 
bowel underwent a laparotomy that evening. Jake continued to deteriorate following a laparotomy and 
sadly died at 2030 that evening. 

Subsequent investigation has revealed that the parenteral nutrition Jake was receiving had been 
deficient in B vitamins and had been for several months.  Jake’s inquest reached the conclusion that this 
deficiency of B group vitamins led directly to his death. 

We conducted our own internal investigation into Jake’s death to establish how our care could be 
improved. The four main findings were: 

1.  It would have been best practice to have contacted Jake’s gastroenterology team at Birmingham 
Children’s Hospital on admission. 

2. Although we established that Jake suffered a low folate we did not discuss this with our own dieticians 
or the parenteral nutrition team at Birmingham Children’s Hospital. 

3. We did not consider alternative diagnoses as a cause for Jake’s presentation. We became focused on 
the diagnosis of Guillain Barre Syndrome.  

4. Our resuscitation and treatment of Jake’s metabolic acidosis and impending shock was not timely. 

We immediately instigated an action plan to improve our practice. This included the following: 

1. To improve the information held on patients with open access to the children’s ward. 

2. To develop a proforma to include details of all health professionals involved in the care of the patient 
and the management plan for admission 

3. These information proforma’s will be updated and reviewed annually by the consultant paediatrician 
team. 

4. An open access standard operating procedure would be developed. 

5. The “situational awareness for everyone programme”, designed by the Royal College of paediatrics 
and Child health would be implemented on the ward. 

In addition, your regulation 28 report stipulates two actions I need to take: 

1. Patients with a medical condition overseen by another hospital should have a named consultant at 
their local hospital. 

2. Where a patient is admitted and has a medical condition overseen by another hospital the specialist 
Department (generally involved in the patient’s care) of the overseen hospital (in addition to any other 
specialist hospital or Department) should be consulted. 

Glen Burley, Chief Executive  

             Russell Hardy, Chairman 

  
   
 
 
 
 
 
 I can confirm that we have developed a standard operating procedure for both the medical division and 
the surgical division (the paediatric department is contained within the surgical division) which address 
both of these issues. In addition, I have confirmed with the associate medical directors of the respective 
divisions, 
through the relevant governance processes in the respective divisions and are in operation. 

 that the standard operating procedures have been 

 and 

I trust the above reassures you and Jake’s family that we have reviewed the circumstances around 
Jakes tragic death, and learned important lessons from it. 

Yours sincerely 

David Mowbray M RCOG 
Medical Director 
Wye Valley NHS trust 

Glen Burley, Chief Executive  

             Russell Hardy, Chairman