2019 AGM: Bladder Management - Dr Mohammed Belal

The final talk of the day was Dr Mohammed Belal of University Hospital Birmingham who talked on bladder management with HSP.

He began by giving some basic information. The bladder is a low pressure reservoir for fluids, it is a void within the body. The bladder is controlled from the brain with nerves between the bladder and the brain. The average person urinates 7 times in a 24 hour period, with young people urinating fewer times than older people.

An over-active bladder is one which gives the person urgency to go to the toilet before the bladder is full. The bladder is contracting without the permission of the person. In the normal population some 15-20% have an overactive bladder.

Dr Belal described two areas of interest in reducing bladder effects.

Lifestyle Changes

Have your last drink of the day 1-2hours before bed. Even taking a sip of drink during the night will create more urine. As you get older more urine is generated at night.

If you snore then more urine is produced, so getting a better pillow to reduce snoring should reduce the amount of urine generated.

If your wee/urine is clear then you are drinking too much. 1 litre of fluids is enough.

Tea, coffee and alcohol are diuretics whose job is is to generate more urine. Reducing intake of these drinks can reduce the amount of urine.

Bladder training can be effective. Even trying to hold back another 10 minutes can be beneficial. It is wise to keep a bladder diary to identify how often you go. Exercising the pelvic floor muscles can help. Emptying the bladder before going out and before going to bed can help.

Reducing weight and stopping smoking can also help.

The body takes a couple of weeks to adapt to any changes, so perseverance is needed when investigating these factors.

Medication

The aim is to reduce pressure in the bladder. This can be achieved in two ways, self catheterisation or using medication

Antimuscarinic drugs reduce bladder spasms. These come in a lot of different forms with different symptoms and risks. Treatment can be limited by side effects including a dry mouth, constipation and effects on the central nervous system.

Botox injections can increase bladder capacity.

Infections are common when starting to use self-catheterisation, which usually need a course of anti-biotics to treat. It is necessary to practice.

It is possible to combine more than one medication.


Dr Belal also described a study which retrospectively looked at 33 people with HSP and their urological function. (link to abstract: https://www.ncbi.nlm.nih.gov/pubmed/30848841).

The most frequent symptom was urgency, most use medication, one third use self catheterisation and 10% have botox injections.

2019 AGM: Carers Trust - Brandon Scott-Omenka

The third presentation was from Brandon Scott-Omenka of the Carers Trust. Brandon explained that the Carers Trust is arranged into different areas, and therefore the services which are offered by the Carers trust in one area might be different from the services in a different area.

Brandon outlined that carers are people who provide care for another. Generally this would include adults caring for parents, relatives or siblings, but can also include children caring for adults or siblings, and parents caring for children. Carers can be any age, Brandon had examples of people aged between 6 and 96.

Caring may include:

• Having an emotional burden of worry about the person being cared for
• Needing to physically assist the person with their mobility
• Spending time on caring activities, shopping (etc.)
• Having relevant knowledge, medical and other, knowing medications, procedures (etc.)
• Organising and attending medical/professional/health appointments (etc.)
• Being and advocate for the person - assessments, health plans (etc.)

Carers can often find caring for another stressful, and many feel unable to cope. Often there are role reversals, and family relationships can breakdown. Sometimes children feel isolated or are bullied.

When seeking help there are also pressures on the healthcare system meaning that help may be delayed, restricted or not available. Sometimes the person needs to end up sooner in residential care.

Being a carer can be lonely and isolating.  New carers are often daunted or overwhelmed by the responsibility of providing the care. Carers also have to balance their own health, with some being exhausted, suffering from injuries or having their own health problems.

With support, these burdens on the carer can be reduced. The carers trust aim to provide support to help carers. This includes:

• Emotional support - a listening ear
• Befriending - linking carers with others
• Carers assessments - helping to get access to support
• Support group access and face to face support
• Events and activities to give a break from caring
• Providing information and advice
• Training and workshops
• Advice on future and contingency planning
• Young carers clubs

Brandon said that there are often tears the first time a carer visits as it is the first time they are being asked how they are.

Link to Carers trust website: https://carers.org/ where you can find out more information.

The relevant legislation if you are in England is the Care Act 2014, with other legislation in other parts of the UK. (https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/care-act-faq). Under the Act carers can ask for an assessment of their needs which runs in parallel with an assessment of the needs of the person being cared for. Decisions on planning about care should take the carers wellbeing into account.

Brandon offered two stats - the care provided by friends and family was worth £119 billion in 2011, and the 6.8million people who provide unpaid care saved the state £132 billion in 2015.