Thank you for registering to attend the Annual General Meeting 2019.

Confirmation has emailed to you. 

We look forward to welcoming you on the 25 July. 

We have introduced vCreate an NHS trusted secure video messaging service for parents, to provide you, our NICU parents, with a better experience.

This safe and secure video messaging service allows our clinical teams to send you video updates during the times you’re unable to be with your child. You can then access the videos, on any device, providing you reassurance of your child’s wellbeing and minimise any separation anxiety.

Parents will need to register for a vCreate account, which is then approved by our NICU team. Once approved our NICU team record short video updates and assign the videos to the appropriate parent account. You can then login at any time to watch your child’s videos and are alerted when new videos are available. As more short videos are added, a secure video diary builds up over time.

Our NICU staff record videos when they are able; they do not have a prescribed rate and the videos will never contain any sensitive clinical information.

If your child is transferred to a new NICU, the account and videos move with them.

When your child leaves and goes home, you are able to download the videos to keep. At this point we will thendelete the videos and remove your account.

The complication rates for weight loss surgery are low. Approximately 1 in 100 may have a problem after gastric band surgery, and 1 in 1000 may not survive the operation. Following gastric bypass and sleeve gastrectomy operations the risk of complications are approximately 3 in 100, and 1 in 500 may not survive the operation. These are historical figures and may in fact be much lower. Patients at higher risk are those who are heavier, older, those with other significant health problems or if they have had previous operations in that area.

The risks of gastric band surgery are low, but the band can occasionally slip, become infected or erode into the stomach. The oesophagus (gullet) can also stretch above the band if you overeat. If these complications occur, generally the band will need to be removed.

Gastric bypass and sleeve gastrectomy operations involve cutting the stomach, so leaks can occur. Should this happen then further surgery is usually required to deal with the leak. Bleeding from the staple lines can also happen and may require a blood transfusion. Internal twisting of the bowel can happen at a later stage following gastric bypass.

One of the major risks of this type of surgery is of blood clots within the legs (DVT), which can occasionally dislodge and get stuck in the lung (PE). We cannot completely get rid of this risk, but we can try to reduce it by giving you compression stockings to wear during and after the operation, giving blood thinning injections during your stay and getting you up and about as soon as possible after surgery. The risk of clots doesn’t go away for a few weeks, so it is important to keep wearing the stockings at home and being as active as possible.

Before being discharged from hospital you will be given information as to what to look out for when you get home, as well as what to do and who to contact  if you are worried.

What is rehabilitation?

The World Health Organisation has defined rehabilitation as:

“A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and self-determination.”
Access to rehabilitation is a human right.

The Bristol M.E. Service aims to support people living with M.E./CFS in developing optimal self-management and rehabilitation. However, surveys carried out by patient charities have found that some rehabilitation approaches have been problematic for some people living with M.E./CFS. We wanted to learn more about this, so that these problems could be avoided. We therefore worked with the national charity Action for ME on their detailed survey of patient experiences of rehabilitation which was carried out in 2010. A detailed analysis of the responses to the ‘free text’ sections of the survey was carried out which encouraged respondents to write about their experiences of these therapies. We published the findings from this research in a peer-reviewed journal [1] as we think that it is important to share knowledge about what works well, and what the problems can be, especially as these problems can be avoided.

We found that key issues for a number of survey participants included:

• difficulties setting a sustainable baseline for exercise or activity (see below)
• the importance of good quality therapist-patient communication and collaboration.

Based on our clinical experience and the feedback analysed in Action for M.E.’s patient survey, we devised the following checklist to help people living with M.E./CFS to ensure that they receive the best advice and support from their rehabilitation therapist.

Rehabilitation checklist

1. Have you been fully assessed?

2. Do you have significant "ups and downs" in your symptoms and ability from day to day?

3. Have you spent time with your therapist discussing your baselines for activities?

4. Are you able to work to your baselines in practice?

5. Have you discussed strategies to increase your exercise or activity level with your therapist?

6. Do you understand that you may experience a mild, acceptable increase in symptoms following your increase in exercise?

7. Have you discussed a setback plan with your therapist?

8. Is your rehabilitation focused on your personal goals?

9. Do you understand that not everyone makes progress with rehabilitation?

10. Are you seeing a therapist who has had success with rehabilitation for people with CFS/ME?

Patients with Inherited Metabolic Disease

A clinical advisory service regarding the investigation and management of patients with Inherited metabolic disease is available by telephone, letter or email.

An adult metabolic clinic is held twice a month at Southmead Hospital, North Bristol NHS Trust. Referral can be organised after discussion with Dr Nathan Cantley, Consultant Chemical Pathologist, nathan.cantley@nbt.nhs.uk, 0117 4148432     

Lipid Clinic
Patients needing lipid advice can have:
1) informal lipid advice and guidance returned by letter/email/phonecall sent to Dr Nathan Cantley using the above contact details, 
2) or refer patients formally for outpatient review at University Hospitals Bristol and Weston NHS Foundation Trust Lipid clinic using the NHE e-referral service available for primary care colleagues in BNSSG for form. Please visit this link for more details: https://remedy.bnssg.icb.nhs.uk/adults/biochemistry/hyperlipidaemia/

Functional neurological symptoms are neurological symptoms that are genuine, but not due to a disease of the nervous system.

They are called functional symptoms because they affect the “function” of the body rather than being caused by damage to the “structure”.

This problem has been around for a long time, for most of history it was called “hysteria”, though it is common in men as well as women. More recently, psychiatrists called it “conversion disorder” because patients were thought to be “converting” stress into physical symptoms.

However not all patients experience significant psychological problems. A lot of patients just have an accident or a period of illness and then get functional symptoms afterwards.

Symptoms can include:

• Loss of motor control
• Sensory symptoms
• Speech problems
• Attacks or seizures
• Visual symptoms
• Cognitive problems

These symptoms are common, affecting around a third of people attending neurology outpatient clinics.
They can resolve quickly and of their own accord, and sometimes a clear, reassuring explanation and some time is all a patient needs to get better.

The following websites have a lot of very useful information:
www.neurosymptoms.org
www.nonepilepticattacks.info

When symptoms become more chronic they can cause a lot of problems, with a third of affected patients not being able to work. Patients are often very distressed by their symptoms. In this case we tend to diagnose “Functional Neurological Symptoms Disorder” (FND). 

When patients are affected by FND they can benefit from specialist help including physiotherapy and psychological therapy.

At the Rosa Burden Centre we have psychiatrists, therapists and nurses with lots of experience working with patients with these symptoms.

We have an outpatient clinic in which we carry out assessments and provide guidance. 

For patients who have tried all the other available treatment and are still very affected by their symptoms we have a three week inpatient rehabilitation program:

Our inpatient program is “multidisciplinary” meaning it involves assessment and treatment from professionals with different expertise:

• Nursing staff trained in physical and mental health
• Physiotherapy
• Occupational therapy
• Psychiatry

Through 1:1 assessments with different professionals, and weekly team meetings involving the patients, we aim to get a good understanding of your symptoms, how they affect you and how you understand them.

Part of the assessment involves us getting to understand you as an individual, because these symptoms are complex and can be affected by lots of different aspects of a person’s history. We will challenge you to try different techniques and learn new skills, to enable you to manage your symptoms more effectively.

By the time the three weeks are over we hope that your symptoms will have improved, your ability to manage the activities of daily life will have improved, and you will have confidence that you can continue to recover at home.

Our service is modelled on the stepped care approach recommended in the 2012 document “Stepped Care for Functional Neurological Symptoms” by Health Improvement Scotland. For more information download Stepped care for functional neurological symptoms PDF.

Our current pathway is:

Step 1: Diagnosis and explanation made by a local neurologist, patient education material provided
Step 2: Brief intervention by local services as able e.g. liaison psychiatry team, IAPT, physiotherapy
Step 3: Chronic symptoms following steps 1 and 2: Referral to outpatient neuropsychiatry for assessment and guidance +/- CBT.
Step 4: MDT inpatient programme.

Outcomes

We currently use the outcome measures from the liaison psychiatry PLAN protocol for our inpatient program, namely the CGI (Clinician Rated) and the CORE 10 (Patient rated)
For 68 consecutive cases in 2017-2018 our outcomes were as follows:

CORE 10 (Patient rated outcome measure):

• Mean 4.7/10 at admission, Mean 2.0/10 at discharge.
• Effect size (Cohens d, no control group) = 2.1.

CGI (Clinician rated outcome measure):

• Mean 19.9 at admission, 11.1 at discharge.
• Effect size (Cohens d, no control group) = 1.2.

Sleep Disorders Clinic

We offer an outpatient clinic for neuropsychiatric sleep disorders, which includes:

• Assessment by a sleep specialist clinician
• Sleep investigations such as polysomnography and actigraphy where these are indicated
• Diagnosis and recommendations for outpatient treatment.

Polysomnography is carried out during a brief inpatient stay at the Rosa Burden centre.
We accept referrals from GP’s by e-referral and secondary care clinicians by letter to the address below.

We will consider referrals for:

• Hypersomnias e.g. Narcolepsy, Idiopathic Hypersomnia, Klein Levine Syndrome
• Parasomnias e.g. Sleep terrors, Sexsomnia, REM sleep behaviour disorder
• Sleep related movement disorders e.g. Periodic Limb Movement Disorder
• Circadian rhythm sleep-wake disorders e.g. delayed sleep-wake phase disorder

We don’t accept referrals for:

• Insomnia
• Sleep related breathing disorders (please refer to your local respiratory sleep centre)
• Sleep problems due to a primary medical, psychiatric or substance use problem.

Contact Neuropsychiatry

Rosa Burden Centre for Neuropsychiatry
Southmead Hospital
Southmead Road
Bristol
BS10 5NB

New referrals 
Stacey Blunsden    
01174140459

Reception
01174140450

Medical secretaries
Yvonne Munn
01174140452

NEAD is a condition which presents mainly as collapses or episodes of unconsciousness, which are frequently mistaken for epilepsy.

NEAD can exist alongside or in absence of epilepsy, thus requiring the need for detailed psychological assessment and treatment.

• 20% of "intractable epilepsy“
• But 20% of frontal epilepsies misdiagnosed as NEAD
• 50% of “Status Epilepticus” in A&E is NEAD
• NEAD most commonly occur in people with epilepsy
• Confirm diagnosis with EEG if possible

Treatment:

• Reduce AEDs if possible
• View video/EEG if possible
• Explore psychotherapeutic issues
• CBT and family education