Taking control of your healthcare system

As I have been going through my HSP journey it has become apparent that I have to be in charge of my healthcare. I perceive that if I didn't do this things just wouldn't happen.

Whilst there may be a degree of local circumstances in my case, i don't think that I am untypical. It is also my preference to know what is going on and to be involved with sorting it out.

Here in the UK it is the Doctor (General Practitioner, or GP) who is able to give access to other parts of the health system, so it is useful for them to know you. In my situation the GP has many doctors, and I rarely see the same one on consecutive appointments. All other parts of the health service write to your GP with their findings, and the GP then makes the relevant booking/prescription/etc.

I have found that I have needed to chase up appointments, and make sure that things are in progress. As HSP is a rare disease, i often have to give a summary of what is going on and why we are trying to do things.

Summary of ley appointments:

Doctor appointment in 2014:

• Referral to HSP clinic - OK although some confusion over clinic code
• Referral to low mood clinic - easy
• Eliminated some bowel problem causes, started path to see others.

From 1st HSP appointment:

• Bladder medication - prescription from GP - easy!
• Referral to neuro-physiotherapist - easy. Stayed on their books.
• Referral to orthotics - easy.
• Bowels discussion - needed to chase to gey appointments, took a long time.
• Ultrasound scan of bladder - discussion, no action.

From 2nd HSP appointment:

• Booked directly with clinic as returning patient. Some hassle
• MRI scan - had to send clinic letter to scan team to show need. Lots of hassle. Also had to chase getting results to HSP clinic.
• Bladder ultrasound - discussed not needed, but appointment given.

My advice is:

• Know what appointments you are trying to get and make sure that you get confirmation of things.
• Assume that no-one talks to each other and that no-one knows what HSP is or how it affects you. You are the expert!
• Realise that a slow acting condition can be a good thing in terms of having to wait for appointments!
• Keep copies of your letters from clinics/appointments so you can refer back to them.
• Note down questions as they come to you, then you only need to find your notes at appointment time!

Various awareness days

Here is a calendar of various awareness days and weeks throughout the year.

February
It is Rare Disease Day on the last day of February (https://www.rarediseaseday.org/) - this is relevant because HSP is a rare disease!

March
The 1st March is International Wheelchair Day (https://internationalwheelchairday.wordpress.com/) - this is relevant as many with HSP need a wheelchair to help their mobility.

March 16th 2019 was Disabled Access Day, which is scheduled to return in 2021 (https://www.disabledaccessday.com/home/). The day is about encouraging people to try something new. This is relevant as many with HSP have difficulties getting into places and undertaking activities.

May
During May is Mental Health Awareness Week (https://www.mentalhealth.org.uk/campaigns/mental-health-awareness-week) - this is relevant because many with HSP have difficulties with depression, stress or isolation

June
In the middle of June is Carers Week (https://www.carersweek.org/) - this is relevant because many people with HSP need care, and some with HSP are providing care for others.

Near the end of June it is Small Charity Week (https://smallcharityweek.com/) - this is relevant because the charities that support HSP are often small, dealing with a rare disease.

September
On 21st September it was Footdrop Awareness Day (https://www.nationalfootdropsociety.com/) - this is relevant because footdrop is a common symptom of HSP

At the end of September it was National Inclusion Week (https://www.inclusiveemployers.co.uk/national-inclusion-week/about) - this is relevant because many with HSP have difficulties at work trying to balance their HSP with their jobs.

October
The 10th October was World Mental Health Day (https://www.mentalhealth.org.uk/campaigns/world-mental-health-day) - this is relevant because many with HSP have difficulties with depression, stress or isolation

December
Coming up on 3rd December is the International Day of Persons with Disabilities (http://www.un.org/en/events/disabilitiesday/) - This is relevant because many with HSP consider themselves to be disabled.

I'll update this page as I become aware of other dates in the year.

(I started this post to note inclusion week, mental health day and persons with disabilities day. Then I realised there were other things I'd noted throughout 2018)