Adult SARF/ECMO Pathway

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Patient and Families FAQs

What is ECMO?

ECMO is an abbreviation which stands for Extracorporeal Membrane Oxygenation. ECMO is a medical treatment which provides oxygen for the body when the lungs and/or heart become unable to do this.

The vital organs in our bodies need oxygen to survive. Lungs that are working normally allow oxygen to pass from the air we breathe into the blood. The blood is pumped around the body by the heart and delivers this oxygen to the vital organs. During this process we produce carbon dioxide, a waste gas, which leaves the body when we breathe out. The transport of oxygen into the blood stream and carbon dioxide in the opposite direction is known as gas exchange.

During ECMO, a machine pumps the patient’s blood from a large vein through a tube to an artificial lung (the membrane) outside the body (extracorporeal). This artificial lung adds oxygen to the blood and removes the waste carbon dioxide. The patient’s blood is then returned to their body through a different tube into another large vein near the heart.

Why do some people need ECMO?

People with lung failure will be managed initially on a breathing machine (ventilator) which breathes for them. The ventilator supports the process of gas exchange, supplying oxygen to the airways so it can travel to the blood stream and therefore to the vital organs and allowing carbon dioxide, the waste gas, to leave the lungs. ECMO may be considered if the ventilator, on its own, is unable to provide enough oxygen or remove enough carbon dioxide. Sometimes, if ventilators are used to give large amounts of oxygen at high pressure, they can damage lungs even more. Breathing machines are still used during ECMO, but the doctors are able to turn the oxygen and pressure levels down. This allows the lungs to rest and heal.

Why does my relative have to travel to receive ECMO?

ECMO is only available at a few specialist hospitals in the UK, including Royal Brompton Hospital in London, because this treatment needs specialist equipment and specially trained staff. Because ECMO is only carried out in a few specialist hospitals, it allows staff to become very skilled and knowledgeable about the treatment.

Since my relative was admitted to Hospital we have noticed it has been more difficult to make ends meet; is there any help available?

A long or short term admission to hospital can often mean a reduction in the income for the whole family.  This can be especially difficult when there are increased costs for family members of travelling to hospital and other unexpected costs associated with a hospital stay.

Whether a patient or somebody from a patient’s family can claim a benefit or get some other financial support will depend on a number of factors and each benefit has its own set of eligibility criteria.  The Hospital to Home Welfare Advisers can provide advice on which benefits a patient may be entitled to and give information on how to apply.  You can contact them by clicking here.

Turn2Us is a free service that helps people in financial need to access welfare benefits, charitable grants and other financial help.  They have an online benefits calculator where a patient or patient’s family can conduct their own benefit check to see what benefits they might be entitled to.  You can access the calculator by clicking here.

I am finding it expensive travelling to the hospital and I have had to put some of the cost onto a credit card. I am really worried about getting into debt. Is there any help available for me?

Being in debt is likely to add to the stress of having a close family member who is unwell.  Caring for someone who is unwell can also increase living costs substantially, meaning that a patient or patient’s family getting control of their finances can be vital.

There are a number of specialist not-for-profit organisations who can help patients or a patient’s family with debt options.  Some of these options include: manageable repayment plans, Debt Relief Orders and Individual Voluntary Arrangements.  Every person experiencing debt problems will have a unique set of circumstances so it is important to get personalised advice and information to get their finances back on track.

It’s also important to be aware of additional income and grants that may be available to cover the extra costs associated with visiting someone in hospital.  This may help to prevent debt accruing in the first place.

You can contact our Hospital to Home Welfare Advisers to get advice about debt options for your patients and their families along with information of other organisations who can provide on-going specialist support.  We will also be able to identify any grants or payments that can help with the cost of visiting someone in hospital. You can contact them by clicking here

My employer has said that they may need to let me go as I have have taken so much time off to visit the hospital. Are they allowed to do this?

It is always best to seek advice if there is a dismissal or a threat of dismissal from work.  This advice should be sought as soon as possible as there are strict time limits for taking cases to the Employment Tribunal.  If the person being dismissed is a member of a trade union, it is often preferable to first make contact with them as the can normally offer wide ranging legal advice and support.

Most workers are entitled to take time off work to deal with unexpected problems or emergencies involving close family members for example if their partner falls ill or is injured unexpectedly.  However, this is not always the case and will depend on the parent’s employment status.  People who are “employees” have different rights from those that are self-employed, for example a subcontractor or freelancer.

The Hospital to Home Welfare Advisers will be able to provide information, advice and support with any employment problem your patient or a member of your patient’s family may have. You can contact them by clicking here.

My home needs adaptions to be suitable for my relative after they leave hospital but the council have refused to award a Disabled Facilities Grant (DFG), what options do we have?

If a patient or patient’s family is refused a Disabled Facilities Grant (DFG), they may wish to complain to the local authority.  The local authority should be able to provide details of their complaints procedure.

The Hospital to Home Welfare Advisers will be able to look at a decision to make sure that the local authority has applied the law correctly in making their decision.

Sometimes local authorities will delay in making a decision leaving the patient or patient’s family without a decision to appeal.  This is done by local authorities for a number of reasons some of which are unlawful.  The Hospital to Home Welfare Advisers will also be able to look at whether their decision to delay is lawful and suggest ways of speeding up the process.  The team can also look into whether the authority is fully complying with Equalities legislation.

If a patient would like the Hospital to Home Welfare Advisers to look into a DFG decision, you can contact them by by clicking here.. They will also be able to look at other sources of financial help to help with any necessary adaptions.