Navigating the United Kingdom’s Superficial Siderosis Health Services

It depends on which country in the U.K. you live in, but there are a few routes you can choose between within the U.K.

Publicly Funded Health Services 

Each country in the U.K. has a public health system. In mainland Britain, there is NHS England, NHS Wales, and NHS Scotland. Northern Ireland has its equivalent, which is called Health and Social Care Services. These services are accessible for U.K. nationals who have a national insurance number.

The public health system is divided into individual health boards (also known as trusts). Each health board covers a specific area of the country. Your local health board will be based in the area that you live and is responsible for funding your care via the public health system. Due to the rarity of Superficial Siderosis, you may need to travel to find a physician who is knowledgeable in the condition. When you need to travel to a different health board, your local health board will transfer funds into the health board in which you are going to receive treatment. Funding needs to be approved and signed off, and the local health board will pay for the appointment or treatment via the public health system. This system enables patients to travel to any area in the U.K. where there is a physician available who may specialise in a particular condition, such as Superficial Siderosis.

Private Health Care

Private health care is also available in the U.K. for those who have either private medical insurance or can pay the cost of consultations and treatments. Non-U.K Residents are also able to access the private health care sector within the U.K., providing they have insurance or a means to fund the treatment.

For U.K. residents, in most cases to access private health care, you will need to get a referral from your G.P., but some private firms offer a self-referral service where patients can refer themselves.

Another route to access private health care is an NHS hospital physician can refer a patient to a private physician to speed up treatment, as there can be long waits on the NHS. Some private physicians also like to carry out an initial consultation, then move a patient to their care on the NHS system, saving a patient money and giving them access to other facilities which may not be available in the private sector.

Whichever route you go down there are lots of options available and public and private care can also be intertwined. The Superficial Siderosis physician directory is a handy tool to help patients find a physician that is knowledgeable in the condition. 

United Kingdom’s Personal Independence Payment (PIP)

People in the U.K. who are disabled could previously apply for a scheme called Disability Living Allowance (DLA). DLA is currently being phased out and replaced with a new scheme called Personal Independence Payment (PIP). People who have a disability can apply for PIP via the U.K. government website https://www.gov.uk/pip.

Eligibility

• You must be over the age of 16 and have a national insurance number.
• You must have a physical or mental condition or disability that affects either your daily living, mobility or both.
• You must expect the disability to last more than 9 months.

PIP is paid dependent on how severe a person’s disability is, and is awarded for two separate categories, daily living, and mobility. After you have made an application via the government website, job centre or by telephoning you will be sent a form to fill in regarding your disability. The form asks questions about the two categories for daily living and mobility. The form also asks for copies any supporting information (i.e., doctors letter showing your disability) that show you have disability. You will be asked to provide the details of your primary carer (such as your neurologist) and your G.P. Once you have sent the form back to the Department of Work and Pensions (DWP), they will provide a score based on the information you have given them.

The DWP will also contact your primary care physician and/or G.P. and arrange for a member of the DWP medical team to visit your home to assess your condition. They may ask for more details about your condition so they can proceed with your claim for PIP.

Once all the above has been processed you will get a response from the DWP in the post. They will score each category and give you an overall score for daily living and mobility. If you are unhappy with the response that you receive you have the option to contact the DWP to challenge it.

If you are admitted to hospital, you must make the DWP aware of your admission. The same applies if you leave the U.K.

For full details please see the U.K. Government website below.

https://www.gov.uk/pip

Due to the various stages of superficial siderosis, it is important to let the DWP know if you get any better or any worse as this may affect your claim for PIP and the amount of money you get.

About Rhys Holmes

Rhys Holmes is a former musician, data analyst, shop assistant and childhood footballer. In his spare time, he enjoys researching Superficial Siderosis, writing, and watching his favourite football team Liverpool FC. He lives in Wales and receives care under NHS Wales.

Follow Rhys on Twitter @RhysHolmes