Wellbeing
Wellbeing covers many elements including diet, sleep, exercise and management of stress levels (a number of PNH patients report that stress makes their symptoms worse).
Psychological Support
Free Emotional Wellbeing Support
As part of the Better Together project, the PNH Support community (both patients and their families/carers) can access a number of emotional wellbeing resources. These resources have been especially designed by the registered psychologists working with us and range from webinars, to courses, to one-to-one counselling. For more information please click here.
Kings College Hospital, London
The of Department of Haemato-Oncology at Kings College Hospital, London offers free and confidential psychological support to all Kings’ inpatients, outpatients, their relatives and friends.
If you would like to meet with one of their team, you can contact them by phone on 0203 299 1567 or dial 1567 from within the hospital.
If you are a patient in distress and think you might harm yourself, please attend your nearest 24 hour Emergency Department (ED). If you require urgent emotional support, please call SLAM 24 hour mental health support line 0800 731 2864 or Samaritans 116 123.
Looking after your mental health is very important. Listed below are some sources of more information and support:
Give us a Shout – TEXT 85258 24/7 for mental health support
MIND – mental health charity
Prescriptions
PNH patients may be prescribed folic acid, iron and prophylactic antibiotics as part of their treatment. Unfortunately, PNH is not one of the medical conditions which allows patients to obtain exemptions from prescription charges.
Prescription prepayment certificate
Patients can pay for a prescription prepayment certificate (PPC) which covers all NHS prescriptions, including NHS dental prescriptions, no matter how many items you need.
There are 2 PPC options to choose from:
- The 3-month PPC costs £30.25 and will save you money if you need more than 3 prescribed items in 3 months.
- The 12-month PPC costs £108.10 and will save you money if you need more than 11 prescribed items in a year.
For more information on PPC’s, please see here
Life Insurance
A common question from people living with PNH is where to find life insurance which covers PNH.
Here is some guidance to obtaining life insurance from Genetic Alliance UK. However, please remember that PNH is not considered to be a genetic condition, it is “acquired” which means you did not inherit it from your parents and it cannot be passed on to your children.
See here to compare insurance quotes
Transport for London “Please Offer me a Seat Campaign”
Transport for London has recognised that many customers with impairments, conditions or illnesses, short term or long term, struggle to get a seat on public transport when they need one.
There is now a free badge and card available to help you, alert fellow customers, that you need a seat.
The badge and card can be used on all services: London Underground, London Overground, TfL Rail, Buses, DLR, Trams and River Services. There is no need to explain your reasons for the badge and card to TFL or fellow customers however the badge and card does not guarantee you a seat.
To apply for a badge please see here
Heathrow Airport Lanyard
Heathrow Airport has a programme whereby those with hidden disabilities can apply for a Sunflower Lanyard, which when worn will discreetly indicate to airport staff that you have a hidden disability and you would like additional support.
Airport staff have been trained to recognise these lanyards, and to provide you with any help you may need at various stage at the airport.
To apply for a lanyard please email: special_assistance@heathrow.com and provide a forwarding address. For more information see here
Disability under the Equality Act 2010
Someone is considered to be “disabled” under the Equality Act 2010 if they have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities. The Equality Act 2010 does not apply to Northern Ireland.
Meaning of “substantial” and “long-term”
• “substantial” is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed
• “long-term” means 12 months or more, eg a breathing condition that develops as a result of a lung infection
The Equality Act 2010 states that where an impairment is subject to treatment, the impairment is to be treated as having a substantial adverse effect if, but for the treatment, the impairment is likely to have that effect. In this context, ‘likely’ should be interpreted as meaning ‘could well happen’. This means that the impairment should be treated as having the effect that it would have without the medical treatment.
This applies even if the measures (i.e. treatment) result in the effects of the impairment being completely under control or not at all apparent. Where treatment is continuing, it may be having the effect of masking or ameliorating a disability so that it does not have a substantial adverse effect. If the final outcome of such treatment cannot be determined, or if it is known that removal of the medical treatment would result in either a relapse or a worsened condition, it would be reasonable to disregard the medical treatment in accordance with paragraph 5 of Schedule 1 of the Disability Act. For more information on questions realting to the definition of “disability” please see here.
You can find out more detailed information in Disability Rights UK’s Disability Rights Handbook.
You can get help and information at your local advice centre, such as a Citizens Advice Bureau. You can also find out more information about where to get personal advice from the Disability Rights UK website.
Employment
It is against the law for employers to discriminate against someone because of a disability. The Equality Act 2010 protects those who are considered to be disabled and covers areas including:
- application forms
- interview arrangements
- aptitude or proficiency tests
- job offers
- terms of employment, including pay
- promotion, transfer and training opportunities
- dismissal or redundancy
- discipline and grievances
Reasonable adjustments in the workplace
An employer has to make ‘reasonable adjustments’ to avoid someone being put at a disadvantage compared to non-disabled people in the workplace. For example, adjusting working hours or providing a special piece of equipment to help do the job.
Recruitment
An employer who is recruiting staff may make limited enquiries about someone’s health or disability.
Someone can only be asked about their health or disability:
• to help decide if they can carry out a task that is an essential part of the work
• to help find out if they can take part in an interview
• to help decide if the interviewers need to make reasonable adjustments for them in a selection process
• to help monitoring
• if they want to increase the number of disabled people they employ
• if they need to know for the purposes of national security checks
Someone may be asked if they have a health condition or disability on an application form or in an interview.
Redundancy and retirement
Someone cannot be chosen for redundancy just because they are disabled. The selection process for redundancy must be fair and balanced for all employees.
Also, an employer cannot force someone to retire if they become disabled.
Benefits and tax credits
The PNH Support community (both patients and their families/carers) can currently access free benefits resources and advice. PNH Support is able to link you to a benefits advisor which is free to you. For more information, please see this webpage.