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Epilepsy, Chronic Myeloid Leukaemia, Paediatric Diabetes, Parkinson's Disease and Gestational Diabetes at Newcastle Upon Tyne Hospitals

posted 13 Oct 2016, 06:14 by Philip O'Connell
Newcastle Upon Tyne Hospitals 
NHS Foundation Trust 



Anita Brockbank 
Una Brechany 
Karen Hamlen 
Kerry Camara 
Deirdre Frost 


17 October 2016 



Newcastle Upon Tyne Patient Stories and Experiences with Flo 



EPILEPSY

Florence has been successfully used by Newcastle Hospitals to motivate patients with epilepsy be more compliant with their medication; revealing impact amongst both with younger and older patients. 

Patients and their families report that they are now reassured that medication has been taken regularly and on time and feel supported in this, with this improved medication compliance resulting in improved symptom control

The team have also noticed that where the patient stopped Flo’s use after a short period, medication compliance was demonstrated to subsequently diminish,. The team feel that this clearly advocates a longer-term use for Flo with this cohort to help sustain the behaviour change particularly for patient with additional mental health conditions. 

Case studies 
Patient 1) One younger patient receiving daily medication reminders via Flo is an 18 year old whose mother encouraged him to sign up to Flo. Before Flo, they both felt that mum was constantly ‘nagging’ her son to take his medication, resulting in some tension and not being successful.After using Flo, the patient reported that his compliance improved as it felt ‘less like a parent nagging’. His mother has asked if he can continue to be supported via Flo ready for when he starts at University in September - 

patient quote

“I’m scared he will not take his medication when I am not there to remind him – can he go on Flo again?”.


Patient 2) Flo also helped an elderly patient demonstrate greater awareness of the importance of taking his medication and to reduce his anxiety associated with this. The patient used Flo to be able to prompt and then confirm that he mad taken his medication as prescribed. 

Being able to confirm, in real time, that medication had been taken revealed an additional benefit above reminding and encouraging the patient to take the original desired action. One morning after being unsure if he had taken his medication or not the previous night, the patient was able confirm with his nurse that he had as he could not remember. This avoided the possibility of side effects associated with medication either being missed or being taken again in error. 

Patient 3) One patient who suffers from mental health problems regularly forgot to take his epilepsy medication resulting in reduced symptom control and associated side effects. The patient’s specialist team subsequently identified him as requiring additional support to improve his compliance and discussed Flo as an option with the patient. Behaviour post introduction to Flo demonstrated dramatically improved compliance during his 12 week interaction with Flo. 

However after the 12 week support ended, it became clear that the patient had reverted back to his behaviour pre-Flo and was frequently forgetting to take his medication again. The patient therefore asked the team if he could continue with Flo’s support in receiving daily reminders but over a longer period describing how he felt better with Flo’s support and the impact this had on reducing his anxiety.

Additional: 
A specialist nurse also uses Flo to prompt patients to ensure they arrange to have their blood test every 2 weeks and send their results to Flo.As a clinician, she finds this very reassuring and is able to see trends in blood results and intervene earlier than she could before Flo.




CHRONIC MYELOID LEUKAEMIA

Newcastle Hospitals have reported success with improving the continuity of care received by patients, by utilising Florence. 

outcomes include

  • Florence is making patients feel more reassured that their own healthcare team will be made aware of any admissions, regardless of where in the region that admission may be 
  • Continuity of care is ensured


Case study using one patient with Chronic Myeloid Leukaemia (CML) 

A patient from another Trust out of the area was transferred to Newcastle Hospitals. On previous admissions to hospital she had experienced issues due to repeated communication breakdowns with her own health care team leaving them not aware of her admission. 

When the patient heard about how Florence could help by allowing her to become involved in notifying her health care team of admissions she was very impressed and extremely keen to become involved. Regardless of where the admission occurs, the Flo pathway allows the patient to contact Flo at any time to indicate that she has been admitted to hospital. Flo then notifies her specialist nurse . 

Thankfully, this patient has not needed to contact Flo so far but has benefited in the knowledge and feels reassured to know that she can at any time.




PAEDIATRIC DIABETES 

Newcastle Hospitals have helped teenage patients with type 1 diabetes who are on the Hba1c pathway to achieve better control of their condition by using Florence. 

Younger patients with diabetes can tend to have busy lifestyles and often find scheduling their medication difficult to fit in to their routine without prompting. They can often be unresponsive to calls and visits aimed at educating them about looking after themselves, seeing these as intrusive and not relevant. 

Since Florence’s introduction, patients in this group have been able to dramatically reduce their persistently high Hba1c levels, by utilising a user-friendly solution that fits with a teenager’s lifestyle and improves compliance. 

The outcome of this improved compliance has been reduced and much more stable blood sugar levels which will ultimately reduce the risk of complications commonly associated with long term raised levels. 

Case Study: Increasing Motivation and Engagement with Diabetes 

Flo was used to help a 14-year-old female patient who had been on the High Hba1c pathway for several years yet had not engaged with telephone calls and home visits from clinicians. 

Most days the patient would come in from school, eat and go out with friends without taking her short-acting and long-acting insulin, resulting in persistently high sugar levels and a high risk of developing complications due to diabetes in later life. 

On 3rd March she attended clinic and her Hba1c was measured as 121. After a discussion between the patient and her Healthcare Practitioner, she was enrolled with Flo and daily prompts to take her medication were arranged. Florence gave her the flexibility to change the time of this prompt at a later date to personalise it to her own schedule . The follow up clinic appointment on the 24th April revealed a dramatic drop in HbA1c to 87.as a result of increased compliance with her prescribed medication regime. 

patient quote

“A lot of my friends are supportive. To me Flo was very helpful as it motivated me to check my bloods and have a little more confidence in knowing I am not alone.” 


“I feel I have had more support from home and hospital.”





PARKINSON'S DISEASE

Newcastle Hospital’s Royal Victoria Infirmary (RVI) are reporting increased confidence and safer surgical scheduling for their patients with Parkinson’s Disease. 

For these patients undergoing deep brain stimulation surgery to help control their tremor, a battery pack is implanted into their chest to power the electrodes connected to the brain. As with all batteries, they have a finite life span, lasting between 12-36 months depending upon individual settings and when they run out, surgery is needed to replace them. 

Parkinson’s nurses at the RVI were discovering that the battery level for too many patients was running down to a critical level but not detected in a timely manner. This was leading to the avoidable need to schedule emergency surgery to replace the batteries, a time-consuming task for nurses and a negative experience for patients. To help mitigate this risk, Parkinson’s nurses would arrange review outpatient appointments solely to monitor patients’ battery levels. This of course led to patient travel, time off work and increased demand on an already busy outpatient clinic. 

The team identified that Flo could support the timely identification of a deterioration in battery life to mitigate the need for routine clinics and at worst emergency surgery. Patients are now offered the opportunity for Flo to prompt them to confirm their battery level every 2 months with nurses being notified when a patient’s battery level drops below a defined measure. This allows elective surgery to replace the battery to be organised in good time, and provides reassurance for patients. 

Case Study: Supporting Safe Surgical Scheduling: 

In 2006, a female patient underwent deep brain stimulation surgery. Prior to being supported via Flo, the patient had attended twice in 2014 solely for a battery check. 

The patient was introduced to Flo to support the timely identification of deterioration in battery life on 3rd February 2016 and subsequently on 5th March 2016 a notification was generated by Flo indicating that her battery was running low allowing both the patient and her nurse to be aware and keep a close eye on the battery level over the new few days. 

On review, the patient and her nurse agreed to schedule battery change surgery for 16th March 2016 as Flo had highlighted that the battery was deteriorating much more rapidly than expected. The patient subsequently underwent her elective surgery on 24th May 2016 and her nurse was able to contact the battery supplier regarding the issue with premature battery depletion. 

As a result of the successes achieved with Flo, the Parkinson’s team are extending their use to include monitoring blood results for patients receiving ‘Tolcapone’ treatment (which can be toxic to the liver).

patient quote

“Flo is working fine. It takes all the worry out of wondering if my battery is going to go flat and I am going to be left high and dry. I know that she is going to text me every two months, to check up on me and my battery levels, its just one less thing to worry about. Many thanks”



GESTATIONAL DIABETES (GDM) - Midwife Narrative

Demonstrating diffusion beyond original development, a gestational diabetes pathway supported by Florence, first developed by Dr Rahul Nayar and Mr Kim Hinshaw at City Hospitals Sunderland, has now been adopted by clinicians at Newcastle Hospitals Royal Victoria Infirmary (RVI). 

At the RVI, Florence is empowering women, providing them with support to become more involved and engaged with their condition. By utilising accessible communication, Flo is breaking down common barriers to communication, particularly with patients for whom English is not their first language. 

Patient feedback to date suggests that most feel Florence is easy and convenient to use, increases confidence in managing their diabetes, saves them time and that they would use Florence again if they developed Gestational Diabetes Mellitus (GDM) in subsequent pregnancies

outcomes include

  • Florence is reducing call times to women with GDM proving to be cost effective and allowing nursing time to be managed more effectively 
  • Capacity has now been generated to dedicate to women who need the most support. 
  • Women are reporting that they are more aware of their blood glucose levels 
  • Patients are being communicated with in real-time, enhancing patient safety and pregnancy outcomes 
  • Florence is helping the Trust to work in partnership with women. 


Florence is used to enable safe monitoring of maternal blood glucose levels at home for women with GDM. Once consented, women are prompted twice daily to take and send their blood glucose readings to Florence. When two high results are recorded, women are then prompted to make contact via phone with their Diabetes Specialist Midwife or Nurse and discuss their results and determine what changes can be made or whether treatment is necessary. The Health Care Professional also receives an email notification of the result, allowing them to then make contact with the woman at this critical point.




patient quote

“Florence helped me monitor my diabetes and keep record of BG readings. Also vital saving time and made it easier than ringing twice a day” 

“Highly recommended” 

“Fantastic because I can just use my phone and it is reassuring knowing that my midwife can access my results any time” 

“Very impressed with the Florence system – found it very supportive.”




#Epilepsy #Chronic Myeloid Leukaemia #Paediatric Diabetes #Parkinson's Disease #Gestational Diabetes #Newcastle Upon Tyne Hospital