Many of us are living with one long term health condition. It's also becoming increasingly common for some people to have more than one long term condition.
We support many people with multiple long term conditions so that they can manage them and live independently in their own home.
Below are some of the conditions and illnesses our clinicians deal with, as well as conditions our children and young people's services advises parents on.
Macmillan Brain Cancer Rehabilitation Service
A primary brain tumour is a tumour that starts in the brain. The brain manages how we think, feel, learn and move. It also controls other important things in the body, such as breathing and heart rate.
There are many different types of brain tumour. They are often named after the cell they develop from or the part of the brain they start in. A brain tumour can be:
Low-grade – not cancer, sometimes called a benign tumour (usually called grade 1 or grade 2)
High-grade – cancer, also called a malignant tumour (usually called grade 3 or grade 4)
A low-grade tumour usually grows slowly and may not cause symptoms for a long time.
A high-grade tumour grows faster than a low-grade tumour.
A brain tumour can cause headaches but it is unusual for this to be the only symptom. Other common symptoms include seizures, weakness of the arms or legs (often on just one side), difficulties with short term memory, difficulty with talking and changes to personality. The symptoms experienced will depend on where the tumour is in the brain and how slowly or quickly it grows. They may develop suddenly or slowly over months or even years.
Other conditions may cause similar symptoms. But if you have any symptoms, it is important to get them checked by your GP.
If you have been told you have a brain tumour, or you want to find out more about brain tumours the links below take you to some of the charities who offer valuable information and support:
Brain tumour charities
Hertfordshire support organisations
If you are having issues with managing your day to day routines, there are teams and services across Hertfordshire that can help you.
Please see below details of services in Hertfordshire that provide support with adult social care, benefits, equipment, travel and support for carers:
- Herts Help
- Hertfordshire County Council
- Hertfordshire Equipment Services
- Millbrook Wheelchair Services Herts
Managing specific difficulties
You may experience specific difficulties as a result of the tumour.
Physical wellbeing is very important while going through treatment and living with cancer. If you have problems with mobility, a physiotherapist referral can help with activity/exercise programmes and equipment i.e. walking sticks, outdoor walking frames, indoor zimmer frames, or a wheelchair.
An occcupational therapist referral can assist with activities of daily living in the home and can provide equipment that includes: bed levers, toilet seat frames, stair rails, grab rails, stair lifts, perching stools, shower chairs, hoists, commode, continence pads, slide sheets, mattress and electric/hospital type bed. They can also help with managing fatigue and cognitive changes such as difficulty with memory, thinking and planning.
You can ask your GP or your consultant to refer you to your local physiotherapist or occupational therapist for assessment.
Macmillan provides practical information on physical activity and cancer:
- Macmillan – Physical Activity & Cancer
- Millbrook Wheelchair Services can help with an assessment and provision of a wheelchair: www.millbrook-healthcare.co.uk
Fatugue or tiredness can be a common symptom following treatment and when living with a brain tumour. Please find links to useful leaflets below:
- The Brain Tumour Charity – Fatigue & Brain Tumours (Jan 2020)
- Brainstrust – My Fatigue Book – a resource to help you understand, manage and own fatigue
Speech, language and swallowing
Speech, language and swalling issues can occur when living with a brain tumour. A speech and language therapist can assess your speech and provide you with advice, strategies and aids to help you communicate and join in conversations. They can also assess your eating, drinking and swallowing reflex.
If you are finding it difficult to eat and swallow then a dietitian can get involved in your care. A dietitian can look at your nutritional requirements and provide you with advice to optimise your diet and your health.
You can request a referral to a speech and language therapist or a dietitian through your GP.
Please find a link below to useful information booklet prepared by Macmillan:
Managing your mental health is a crucial part of living with cancer. Hospice Living Well, Day Services and Family Services are available to provide emotional and psychological support.
Please see useful links to resources for counselling, hypnotherapy and complimentary therapy services and living well with brain cancer below:
- Hertfordshire Wellbeing Services can help with counselling services: www.hpft.nhs.uk
- Brainstrust – Counselling & Hypnotherapy
- Brain Tumour Support – Counselling Service
- Macmillan – Cancer and Complimentary Therapies
- Building the Bridge to Life with Brain Cancer
Memory, behaviour and personality
Cognition, behaviour and personality change can become a problem when living with a brain tumour. Psychologists will assess the changes to your cognition and can work with you and your family together to find strategies to manage and ways of coping with these changes.
There are useful resources to help you understand and manage cognitive difficulties:
- The Brain Tumour Charity – Memory Difficulties and Brain Tumours
- The Brain Tumour Charity – Thinking Difficulties
- Brainstrust – Behaviour and Personality Change
Financial support and benefits
Financial support can be very important when you are living or caring for someone with a brain tumour. Benefits include: Employment and Support Allowance (ESA), Attendance Allowance (AA), Personal Independence Payment (PIP), Blue Badge and Bus Passes.
Brain Tumour charities are happy to provide advice and support with accessing benefits. Please find links below to services that provide information and guidance that may help:
- Macmillan – Help with the cost of cancer – benefits and grants and money matters
- The Brain Tumour Charity – Financial Support if you have a Brain Tumour
- Hertfordshire Macmillan Benefits Service provide specialist benefits advice for people affected by cancer
- Hertfordshire County Council – Bus Passes for Disabled People
- Hertfordshire County Council – Blue Badge Application
Advanced care planning
Planning ahead with your priorities and preferences for your future care is an important part of living with a brain tumour. Advance Care Planning includes writing your will, organising Lasting Power of Attorney (LPA), organ donation preferences, and considering decision making about Advance Decision to Refuse Treatment (ADRT) and Cardio Pulmonary Resuscitation (CPR).
Below please find useful documents to help you plan ahead:
- Macmillan – Planning Ahead
- Planning for your Future Care
- Preferred priorities for Care
- Cardio Pulmonary Resuscitation
Hospices in Hertfordshire
The below for hospices in Hertfordshire provide Hospice at Home and Day Services for individuals with life limiting conditions:
For further help and referrals into the above services, please contact your GP or your local Community NHS Hub:
- East & North Herts Community Hub: 0300 123 7571
- West Herts Community Hub: 03000 200 656