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

Psychosis

Ictal Psychoses - include non-convulsive status:

• Prolonged automatisms
• Confusion
• Episodic hallucinations  
• Mood changes
• Paroxysmal EEG changes
• Clearly episodic, rarely >1 hour

Post-ictal Psychoses- Fugues:

• Wandering
• Altered behaviour
• Amnesia
• ?“dissociative”
•  EEG usually “normal”

Twilight states:

• Abnormal subjective experience (cognitive and affective)
• Perseveration
• Subtle cognitive impairments
• Paranoid hallucinatory experiences
• May be associated with deep EEG changes or with “forced normalization”

Chronic Inter-ictal Psychoses: 

• 3% risk - especially if left temporal lobe

Chronic paranoid hallucinatory:

• “Schizophreniform”
• Onset 10-15 years after epilepsy
•  Less Family history
•  Pre-morbid personality
•  Warmer affect
•  Less personality deterioration

Affective disorder and Epilepsy

Ictal emotion:  

• Fear, also depression,                            
• Rarely elation                          
• Can be prodromal, partial status, post ictal                      
• Lack precipitant                                                                        
• Sudden onset and ending                           
• Have a primitive, unvarying quality

Inter-ictal depression and anxiety:

• 15-45% prevalence
•  Major Affective Disorder 11% (cf 4.9% gen pop)
•  62% lifetime prevalence (cf 17% gen pop)
•  High anxiety and hostility scores
•  Risk after surgery: 2yrs=10%(successful or not)
•  Multi-factorial causation (biological,  personal, family and societal factors)
•  Treatment: attend to these factors:
  SSRIs, can use ECT
  A range of interactions, mostly “academic”

Personality and Epilepsy

A long and misleading history of prejudice

• Possibly a "Temporal lobe personality syndrome”
• Bear and Fedio 1977 :
  • Humourless sobriety
  • Circumstantiality
  • Viscosity
  • Religiosity
  • Emotionality (Rt)
  • Hypergraphia (Rt)
  • Ruminative intellectual (Lt)

• However, “current data do not support or refute any consistent clustering of behavioural traits in epilepsy” Devinsky 1996
• But may show extremes and diversity.

Aggression and Epilepsy

• Aggression - ictal, possibly ictal, not ictal
• Ictal:  usually part of confusion, poor handling etc
• Very rare as part of an automatism
• Poorly directed, fragmentary, simple, brief,
• Repetitive, lack of concealment, remorse after
• Possibly ictal: ? “Episodic Dyscontrol”
• Not ictal: statistical relationship between epilepsy and
• Violence for various epidemiological reasons.

Expectation of surgery:

• Desire beyond seizure.
• Various expectation of social and psychological nature.
• Self confidence.
• Driving.
• Employment.
• Getting married.

Affective Disorder - Depression

Affective Disorder – Anxiety

Psychosis

Non epileptic attacks post epilepsy surgery

Access to Health Records Act 1990

Can I access the health records of someone who has died?

For the Trust the ethical obligation to respect a patient’s confidentiality extends beyond death. The Information Tribunal in England and Wales has also held that a duty of confidence attaches to the health records of the deceased under Section 41 of the Freedom of Information Act 2000.

Who can apply for access?

If you want to see health records of someone who has died, you can Make a Subject Access Request to the Trust under the legislation Access to Health Records Act 1990.

Under the terms of the Act, you will only be able to access the deceased’s health records if you are either or unless they requested confidentiality while alive, a patient’s:

• Personal representative (the executor or administrator of the deceased person’s estate)
• Someone who has a claim resulting from the death (this could be a relative or another person). 

Who must give access?

After a patients death, GP health records may be held by the relevant CCG, hospital records may have been retained by the hospital the patient attended or they may have been sent to a local archive storage.

The Trust is required to take advice before making a decision about disclosure. This could be from several health professionals who have contributed to the care of the patient during the period to which the application refers. If no appropriate health professional who has cared for the patient is available, a suitably qualified and experienced health professional will provide advice.

Once the Trust is satisfied the person requesting the information is entitled to it, access will be given within the specified time limits. Access will be given either by allowing the applicant to inspect the records, or extract, or supplied a copy if this is requested.

How long does the Trust have to comply?

Where the application concerns access to records or parts of records that were made in the 40 day period immediately preceding the date of application, access will be given within 21 days. Where the access concerns information, all of which was recorded more than 40 days before the date of application, access will be given within 40 days.

Can a fee be charged?

• For access to the information where records were made more than 40 days before the date of the application for access – maximum £10
• For providing access to information if the records have been amended or added to in the last 40 days – no fee may be charged
• For supplying a copy, a fee not exceeding the cost of making the copy and postal costs may be charged
  Cost of CD; - £25 per disc
  Cost of Photocopying; - 25p per page
  Post & Packaging; - dependent on weight etc.
• Health professionals may charge a professional fee to cover the costs of giving access to the records of deceased patients that is not covered by legislation.

What information will not be disclosed?

• If it identifies a third party without that person’s consent, unless that person is a health professional who has cared for the patient
• In the opinion of the relevant health professionals, it is likely to cause serious harm to a third party’s physical or mental health
• The patient gave their information in the past on the understanding that it would be kept confidential
• No information at all can be revealed if the patient requested non-disclosure.

We have received your completed Subject Access Request. 

North Bristol NHS Trust is obliged to confirm proof of identity and/or authority and it may be necessary to obtain further information in order to comply with this Subject Access Request.

North Bristol NHS Trust has one calendar month of receipt of the request to provide you with the information requested. However, we can extend the period of compliance by a further two months where requests are complex or numerous.