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Patient stories

Read about our patient and family stories and experiences.

Ben’s story

Ben (aged 7) was diagnosed with a brain tumour in 2011. He was referred to the Brainbow service by the Clinical Nurse Specialists in 2014 during a clinical appointment.

In October, he was seen as an outpatient by the Occupational Therapist and Physiotherapist plus the Clinical Psychologist.

  • Ben was re-assessed by Brainbow from a neuropsychological point of view (having been previously assessed in 2011). A Statement had previously been requested but not pursued by the school.
  • Brainbow looked at cognitive functioning, memory and executive functioning. This highlighted Ben’s strengths in remembering meaningful information, and reading. However, it highlighted his difficulty with reading comprehension and mathematical reasoning, both of which had been described as being good at school. Plus it highlighted his organisational difficulties and issues with distraction. Also highlighted that although Ben would not possibly classically qualify for a Statement on his scores alone, comparison with his scores from previous assessment in 2011 revealed that he had plateaued. (Thus his raw scores remained the same – these should have increased in line with his age and development). This needs to be monitored and reassessed before transition to secondary school. A Statement would provide him with more 1 to 1 support which is what he needs for him to reach his full potential.
  • A telephone conference was held between Brainbow and Ben’s school. Occupational Therapy and Psychology feedback provided. This was found to be very useful and consistent with what they see at school. Teachers also keen to explore his maths and reading comprehension further. The benefits of a Statement were discussed and because of Ben’s comparative results with his previous testing, a Statement will now be considered.
  • At the initial Brainbow visit, Mum reported difficulties with bathing Ben (she had to physically lift him into the bath and he becomes extremely distressed) and dressing, and spoke about behaviours warranting further investigation: atypical reaction to temperature and touch etc.
  • Also concerns from Mum and school around writing in school and his ability to organise himself and his belongings.
  • Ben was assessed around sensory processing. Areas highlighted included tactile and auditory processing.
  • Strategies to manage bathing and dressing given to Mum (considering both physical needs of reduced balance and sensory needs as well as methods to reduce anxiety around this activity).
  • Joint working between Occupational Therapy and Clinical Psychology was very important to ensure correct practical strategies were provided.
  • Strategies were given to the school around concentration, organisation, writing, and posture. These will help to increase Ben’s participation in classroom activities, reduce anxiety and manage his sensory and cognitive needs.

Julie’s Story

Julie (aged 15) had a recurrent brain tumour and was originally highlighted to the Brainbow service by a social worker involved in her care.

Julie was invited to our Brainbow introductory appointment where she had the opportunity to meet with the full multi-disciplinary team.

Many areas needing further assessment were identified from this initial meeting. Julie was invited to return for a full Brainbow assessment block with the Speech and Language Therapist, Occupational Therapist, Physiotherapist and Clinical Psychologist.

The Brainbow Assessment Block comprised of a holistic review of Julie’s needs, including:

  • Close liaison with the local Speech and Language Therapy service who previously provided the patient with support. Julie had opted out of attending social communication groups as she did not see the need for these.
  • Informal communication assessment was therefore offered by the Speech and Language Therapist, through discussion with the patient and parent. This highlighted key issues around social communication, compounded by her cognitive issues (e.g. planning/processing and memory problems) which also impacted on her expressive language skills.
  • Some challenges were identified around the patient’s reduced insight into her difficulties and lack of awareness of the impact of her communication and behaviour on those around her. Concern for her long-term emotional well-being and general safety was highlighted as she interacts with those who are unaware of her current difficulties.
  • The Speech and Language Therapist agreed to do some joint sessions with the Clinical Psychologist to explore Julie’s mood and look at how her difficulties with social communication may be contributing to her feelings of frustration/general outbursts.
  • The patient was not known to Occupational Therapy locally so the Brainbow assessment block focused around:
  1. Participation in activities of daily living (setting goals and priorities for intervention). This was discussed with Julie and Mum separately to ascertain Julie’s insight into her skills.
  2. Work to assess fine motor and coordination, including handwriting skills.
  • The wider multi-disciplinary team feedback meeting agreed that on-going focus should be on the development of functional life skills. This will be a process and all services involved in the patient’s care should work on the same goals, created by Julie. In this way, Julie’s autonomy and self-esteem will hopefully improve and hopefully she will feel less frustrated.
  • Initially, the Occupational Therapist will complete a block of input on a specific goal of Julie’s choice. The aim of this block will be to develop an approach and strategies to safely learn new skills in graded steps. These can then be applied for any new activity.
  • Julie was not known to physiotherapy services locally however there was a discussion with her school and she has full access to P.E. lessons.
  • She is able to participate in a variety of activities however further activity ideas could be used additionally.
  • Brainbow assessment focussed on gross motor function and balance as well as outdoor mobility.
  • Julie managed very well however it was identified that her high level balance was reduced and activity ideas will be shared with home and school.
  • The Brainbow aim is to initially implement activity ideas to support Julie in achieving her goals.
  • Previous clinical psychology assessment was undertaken at Addenbrooke’s in May 2013. This had highlighted difficulties with processing information, non-verbal reasoning ability, verbal memory difficulties. A visit was arranged to school and recommendations included using precision teaching methods, backward and forward chaining to master skills, employing both verbal and visual information to aid learning, using ipad, and voice reminders.
  • Brainbow assessment block was explored to confirm whether Julie was using the strategies suggested. Clinical Psychologist assessed her mood and general emotional state. She scored high on the measure that looks at distress and anxiety.
  • Clinical Psychologist has planned six sessions to explore her mood and feeling, plus losses – both friends and skills. This will help her look at how she expresses her frustration, what her school experiences are and will incorporate Speech and Language Therapy and Occupational Therapy goals with Clinical Psychology.
  • Without the Brainbow service, Julie’s specific rehabilitation needs would not have been fully identified. Opportunities to fully explore and resolve difficulties to improve her longer-term quality of life would have been limited.

Patrick’s story by his mum, Sarah
A smiling paediatric physiotherapist with a smiling child outside
Patrick with Paediatric Physiotherapist David Young

"Patrick was diagnosed following a routine eye examination. He had suffered the odd headache in the run up to Christmas but nothing that would concern us and we thought he just had a bit of a virus. It was such a surprise when the optician mentioned Patrick’s optic nerves were swollen and she told me that it was normal practice to refer him into the eye clinic, and I would hear something about an appointment over the next week.

"I of course googled what could cause swollen optic nerves and saw that Brain tumour was one cause but dismissed this because no one ever thinks worse case scenario, particularly when we are talking about our children. The more common cause would have been an infection somewhere, so this is what I had expected.

"The next day when Patrick suffered a really bad headache I was worried his Infection was getting worse and I whisked him off to A & E. In A & E we were told that it was most likely an infection but an MRI was necessary to rule out anything else and that we should expect an appointment for an MRI in the next 7 to 10 days. The next day we received a call at 10am telling us they had a cancelation and could Patrick come along for 11.15am that day. We duly attended en masse: Patrick’s father, me and his brother with no idea of how our lives were to change forever.

"The MRI showed that Patrick had a 4.5cm tumour at the back of his brain and our simple ordinary lives changed forever.

"We were told that we were being transferred to Addenbrooke's that evening (Monday 6 January 2014) so that we could start treatment. It all happened very quickly; I think that the size of Patrick’s tumour and the fact that he had started to suffer significant headaches meant that they were worried that things were progressing quite fast.

"Once at Addenbrooke's tests showed that Patrick had some weakness on his left side as a result of the tumour. Patrick was started on a course of steroids before his operation.

"Suddenly we were introduced to a whole new vocabulary, and were talking about different types of tumours, benign and non benign, hydrocephalus, rehabilitation and neurosurgery. It was absolutely terrifying.

"It is the nature of the treatment of brain tumours that we fall within the care of a number of teams and in that first week before Patrick had his operation we were meeting so many different people: surgeons, neurologists, oncologists, different types of therapists; it was bewildering. We were warned of a wide range of problems that Patrick might have after his surgery such as difficulty swallowing or problems with his eyesight, walking and talking. It was a parents living nightmare, our beautiful seemingly healthy little boy was facing an operation that could take his life and if not his life it could rob him of all that made him who he was.

"It was during that first week that we started to meet members of the Brainbow team, who explained that they would be around to help Patrick to recover from his surgery. I confess during that first week there was so much to take in that you do not really start to process what people have told you until you have dealt with the immediate issue of will my son survive his surgery and how much of my little boy will I get back.

"That first week we met with Dave who came over to assess Patrick before the operation so that he could see how Patrick was before the operation and I assume then he could see for himself any difference in Patrick following the operation. We also met with the Antonia, the Speech therapist and Ana the Brainbow psychologist who talked to us very generally about some of the issues Patrick might face following his surgery. Indeed Patrick did have some terrible nightmares following surgery about people drilling into his head and it was with the guidance of Ana that we were able to help him work through those nightmares.

"Patrick had his surgery on Friday 10th January, five days after we were admitted to Addenbrooke's. His surgery lasted for 9.5 hours and we were very lucky because the surgeon was able to remove Patrick’s tumour.

"Patrick was moved to high dependency and returned to the ward on Saturday 11 January 2014. Words cannot describe the elation. We were lucky Patrick could swallow and speak; his problems were with balance and co-ordination because the tumour had been located in the part of his brain that deals with balance and co-ordination. We were subsequently told that Patrick had a Pilocitic astrocytoma – a benign tumour at the back of his head.

"We were so wrapped up in the success of the surgery that we had not thought about the process of rehabilitation.

"It was on the Monday after surgery Katie and Dave (the occupational therapist and physiotherapist on the Brainbow service) came to see us, and they were like a breath of fresh air. They were the people from Brainbow that we worked most with, because this was where Patrick needed help.

"I was helping Patrick to move in bed, as he had very little strength following his surgery and it simply didn’t occur to me that he would be capable of anything for some time. It was Katie and Dave that showed both me and more importantly Patrick that he could now start to recover some of the balance and co-ordination that had been impacted by the surgery.

"I will never forget that first visit on the Monday when they said that Patrick could get himself out of bed; I had been all but lifting him in and out of bed. I had to take a step back and let Dave and Katie help us start the process of rehabilitation. When I say I had to take a step back I literally moved to the other side of the room because the mum in me wanted to shout stop, no, wrap him up in cotton wool.

"But Katie and Dave really engaged Patrick in the process and explained to him how he could do this for himself, and he did. He followed their instructions and for the first time was able to move to the edge of the bed and stand up, albeit a bit wobbly.

"That was a defining moment in Patrick’s rehabilitation, for both Patrick and we as Patrick’s family. For Patrick finally there were people there to help him achieve what he wanted which was to be physically able again, to help him have some control over his treatment and to give him something positive to work towards and achieve on a daily basis.

"For us as parents we realised that the surgery was only half the story (albeit a very important part) and Patrick’s quality of life was going to be directly impacted by how he recovered his balance and coordination.

"So whilst the medical stuff continued on around us, something over which we had no control or really input into, the physical rehabilitation was something to which we were all able to engage with. Not only did this significantly improve Patrick’s recovery outcome but it also impacted on his mental state; he could see for himself that he could get better and if he listened to what Katie and Dave told him then he could do this for himself.

"There is no doubt it was incredibly difficult to see him being challenged and pushed in this way, but I knew it was needed and I trusted Katie and Dave. They gave Patrick permission to try and do things for himself, and to have goals and push himself – I really can’t overstate how important this was. He trusted them and because he was lucky enough to see the same two amazing therapists every day it meant that he developed this trust and confidence in them and it emboldened him. He looked forward to their daily visits not only to show them what he could do but also so he could discuss with them what the next goal should be.

"The daily visits meant that the goals could be achieved on a daily basis and this motivated Patrick even more because he could see his own improvement day by day.

"Initially Patrick couldn’t walk unassisted and when he was assessed about 2 weeks after surgery he could not catch or walk a straight line. That assessment was hard for all of us but again Katie and Dave were able to ensure that the outcome of the assessment was very constructive because they were able to work with Patrick to develop a scheme of exercises and activities that would help him recover those skills.

"We saw a lot of Katie and Dave whilst Patrick was in hospital, and they were constantly asking him to set new goals for himself and think about what he’d like to try next. After leaving hospital we continued to have contact and update them on our progress.

"He can now catch a ball and he rode a bike for the first time only 6 weeks after this operation (it was a bike ride round Rendlesham forest!).

"It is only now some 8 weeks after Patrick’s surgery that we can fully appreciate the very significant and indeed crucial part the Brainbow service played in Patrick’s recovery. Patrick turned 9 at the weekend and he could not understand why I should be concerned by his wanting a tobogganing party!

"The Brainbow service gave Patrick control over his recovery. The trust he had in the Brainbow service and the confidence they gave him in his own ability to overcome the physical hurdles he faced in his recovery have meant that he is essentially already back to doing all the things he did before the surgery. Patrick is a very sporty boy, and so it was really important for him to get back to being physically active. Throughout this process we have left the medical and surgical treatment of Patrick’s tumour to the doctors to take care of, which is how we wanted it, but the rehabilitation has been something that with the guidance of the Brainbow service we have all been able to engage with.

"I can say without doubt or reservation that without the input of the Brainbow service Patrick would not have made the progress he has. The physical improvements have of course ensured that Patrick’s state of mind has remained very positive which again has assisted his recovery. Without the assistance of Brainbow I am sure that the physical limitations would have got on top of him. Instead Patrick has had the opportunity to access a service that allowed him to take control and drive forward his own recovery.

"Eight weeks on from surgery, Patrick is now cycling, running and playing football. He is like any normal little boy. We know that the first three months after a brain injury and surgery are vital for getting back to normal, and we really do feel that if Brainbow hadn’t been involved as closely as they were early on Patrick would not have been able to recover so quickly and absolutely. I know that he did a lot of the work for himself and I’m incredibly proud of him for that, but Brainbow gave him the time and resource to be able to do it. Knowing what Patrick is like, I cannot imagine the psychological effect it would have had on him if he hadn’t had goals and seen such quick progress.

"Now Patrick loves coming back to Addenbrooke's for his follow up appointments- he’s coming back in next week, and he can’t wait to see the Brainbow service team to show them all the new things he can do. I didn’t understand at the beginning how much difference a service like this could make, but I am so pleased that it was available and I feel strongly that without it Patrick would not be back doing the things that he is today."

Sarah - Patrick’s mum.

March 2014

Maria’s story

Maria (aged 15) had an introductory appointment with the multi-disciplinary Brainbow Service at the Child Development Centre on the Addenbrooke’s site in November 2013. This initial assessment highlighted that the family were keen to address some new goals in rehabilitation.

Maria was known to community Physiotherapy and local Hospice Occupational Therapy and Physiotherapy teams. A multi-disciplinary meeting with the family and local therapists was held and Brainbow’s role within the local provision was agreed upon: Brainbow was to provide a block of intervention to address particular goals.

Multi-disciplinary baseline assessments were completed pre-treatment. An example is a feeding assessment incorporating Occupational Therapy for postural management and the physical act of feeding, Speech and Language Therapy for swallowing and oral motor assessment, and a Dietician for review of energy intake in light of upcoming increased expenditure of energy. Specific outcome measures were also used in targeted areas.

It was agreed that a Goals setting tool (COSA) would be completed by the Hospice Occupational Therapist with the child and goals then worded with the family within a Brainbow session. Goals focused on three areas: Writing, washing and mobility.

Katie (the Brainbow Occupational Therapist) and Dave (the Brainbow Physiotherapist) worked with the child on a twice-weekly basis. In order to empower the family and work to a community model of care, activity ideas were provided and Therapists incorporated therapeutic activity into daily routines. All activity ideas were copied to local Therapists and joint sessions were held towards the end of the block of treatment to ensure a smooth transition back to community teams.

A joint report was compiled by all professionals involved from Brainbow in order to create a holistic understanding of the child’s needs and how the goals were addressed.

A multi-disciplinary meeting was held with local and Hospice therapists to formally hand over, to create a plan for next steps in Maria’s care and to create a smooth transition back to local therapists.

Outcomes for Child:

  • Maria has increased time at school (she is now there three mornings a week)
  • She is able to transfer at home safely with Mum’s help instead of being lifted
  • She is now walking with a frame and assistance at home
  • She is now washing at the sink independently instead of lying in bed and her mum washing her and has also starting to be able to use the shower at home
  • She uses a pen to write cards
  • She feeds herself and takes all her food orally so there is a date for her PEG removal
  • Maria is trialling a power pack on a wheelchair to gain independence outside
  • She is managing three steps (stairs) with assistance