Children’s Long Term Ventilation Pathways

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Professionals FAQs

Who is responsible for teaching the parents/carers the skills required to look after LTV children?

We appreciate that completing training for parents and staff for LTV children is a complex process. Our team is well placed to provide training due to the experience and exposure to the children we have and therefore of course are always very happy to support parents, acute and community teams with their learning. Unfortunately, as the children we support are across the whole of the south east of England we are unable to observe parents and staff in carrying out specific skills over a period of time as we simply cannot guarantee to be at the bedside at the right time to do this as these skills are required by the patient. Therefore a collaborative approach to training and competency assessment is really the most appropriate option and what happens in the majority of cases, with the LTV team providing teaching on the underlying theory as well as part and whole task training with various simulated equipment and the local centres observing these cares being performed on the child following this and being satisfied they were performed safely. A joint competency document for carers and staff for children on long term ventilation have been written collaboratively by Royal Brompton Hospital and Great Ormond Street Hospital. This document aims to both guide what needs to be taught and provides a framework for assessing competence of key knowledge and skills areas.

Link to joint competency document

Whose responsibility is it to carry out a housing assessment?

The LTV team have produced a tool which can be useful when a housing assessment is undertaken. Where possible, we are happy to provide support by attending housing assessments and suggesting solutions to potential challenges the current home may pose. The overall decision as to whether the house is or isn’t a suitable discharge destination lies with the continuing care team. Often, an additional housing /risk assessment is undertaken by the care provider as they have to ensure that it is a safe working environment for their staff.

How do you decide which ventilator a child is put onto?

The final decision of exactly which ventilator is selected for a child lies with the lead clinical team and their assessment of the child’s ventilator needs. However, we are and expert service and are happy to advise as we have experience of babies and children requiring ventilation for a variety of reasons.

What buggy would you recommend for long term tracheostomy ventilated children?

The main consideration for a child requiring LTV is they have a rear facing buggy so that their parents/carers can quickly identify when they need suctioning etc. However, it is also important that the child’s equipment does not exceed the recommended weight limit. In many cases, children under two years do not meet the criteria for wheelchair services to provide seating for them but they will occasionally provide vouchers that can contribute to the cost of a high street buggy so we do recommend a referral to them in the first instance.

What do I do if the ventilator my patient is on fails?

Most long term ventilated children, depending on how much they need to use the ventilator, go home with 2 machines. This is to ensure there is always a backup machine to use in the event of a ventilator failure. We would also recommend purchasing a servicing and maintenance agreement with the ventilator manufacturer or other appropriate organisation prior to the child’s discharge home so help can be sought in this situation.

The child I am looking after has been prescribed a nebulised medication. How can I give this whilst the child is on the ventilator?

It is possible to give nebulisers whilst the child is being ventilated by using equipment that can be inserted in line with the ventilator circuit. Some particular nebulised medications, depending on local policy, require filtering therefore the set-up of the equipment may vary for these. For advice on the set up and equipment available you may contact The Childrens Long Term Ventilation Service.

Will the LTV team continue to be involved post discharge?

At present the team are commissioned to provide support only up to the point of discharge home. However, if the child’s respiratory consultant is based at the Royal Brompton Hospital then the child will have their sleep studies carried out here and will therefore continue to see various members of the LTV team during their stay. However, we are happy to answer general LTV queries within normal office hours.

How can I refer a patient to the Children’s Long Term Ventilation Service?

If you are a registered user of the Hospital to Home pathway and have received training you can refer a patient directly online. To access the pathway click on the icon on this website and you will be redirected to the login page. Further details on how to refer on the pathway for registered users can be found on this website. Under the ‘Pathways’ tab select LTV pathway then information can be found both in ‘Pathway FAQ’s’ and training module 1.

If you are not a registered user of the Hospital to Home pathway, don’t worry you can still refer a patient to the service. Please click here to email us. You will be asked to complete and return a referral form alongside a recent medical summary for the child. Following receipt of a referral you will be contact by the Children Long Term Ventilation Service to arrange an initial visit with the core clinical team and to meet the child and their family.

Can I only refer children to the Children’s Long Term Ventilation Service who already have a tracheostomy?

No. In some situations the decision to perform a tracheostomy can be a very difficult one. The Children’s Long Term Ventilation Service has seen hundreds of children and therefore can support the clinical decision making through sharing their experience. Not all children referred to the Children’s Long Term Ventilation Service have had a tracheostomy, in some circumstances, with appropriate patient populations we have had very good results with weaning strategies thereby avoiding tracheostomy. The team can work with you to identify when an attempt at weaning may be appropriate and support you in that through provided structured weaning advice and documentation. In those situations where tracheostomy is likely to be in the best interests of the child the team can support you to discuss this as an option for the family.

A child where I work is having a tracheostomy but the team feel very nervous about looking after them. How can we access teaching and support?

The Children’s Long Term Ventilation Service offers an outreach education service. Details of this service can be found on this website. If you would like to discuss your individual requirements please complete the form to ‘Book a Bespoke Session’ and a member of the education team will contact you.

My patient cannot be discharged until his/her family is allocated a house by the council, is there a way of reducing the waiting time?

In order to make sure that the patient or the patient’s family has the best chance of quickly securing a suitable property it is important that they keep the local authority informed of any changes likely to affect their application, for example, changes in the numbers of children or a change in a medical condition.  This may mean that they have to make regular contact with the local authority.

Even when all information has been provided to their local authority, a patient or patient’s family may feel that the amount of points or banding they have been placed in is incorrect and does not suitably reflect their housing need.

If the reason for appealing is that the local authority have failed to properly take into account the medical needs of the patient, it often helps to include a letter from medical staff involved in their care to support the appeal.  Our Hospital to Home Welfare Advisers are able to provide information and support should a patient or patient’s family be thinking of appealing against any housing decision made by a local authority

Can my patient or someone in my patient’s family claim any benefits?

There are a number of benefits and tax credits that patients or a family of a patient may be entitled to.

Some benefits can be paid to someone because they suffer from or care for somebody with a disability while others may be paid for other reasons, for example to help with the cost of rent payments for those on a low income.

Whether a patient or somebody from a patient’s family can claim a benefit 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 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 here. (http://www.turn2us.org.uk/benefits_search.aspx)

I have heard that there are changes to the benefits system taking place; will this have an impact on my patients and/or patient’s family?

Over the last few years the government have introduced a number of changes to the benefits system.  Some of the changes that might impact your patients and their family are:

  • The removal of the spare room subsidy If your patient lives in social housing their Housing Benefit may have been reduced if their home is considered too large for them to live in.
  • Changes to the Social Fund – The government have replaced Community Care Grants and Crisis Loans with localised schemes.
  • Personal Independence Payment (PIP) replacing Disability Living Allowance (DLA) for those aged 16 and above. This is being phased in over a few years and will also not affect any child claimant under 16.
  • The Benefit Cap – This is a limit on the total amount of certain benefits somebody can get if they are of working age and not working.
  • Universal Credit – Universal Credit (UC) is replacing certain benefits in parts of the UK. Universal Credit is being introduced in stages beginning with new claimants in certain areas.

There are certain protections in place for disabled people and those that care for disabled people.  You can contact our Hospital to Home Welfare Advisers for more information.

My patient’s family have mentioned to me that they are struggling with the cost of daily living and have gotten into debt as a result. Is there anything they can do?

Being in debt is likely to add to the stress of being or 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.

It is important that any plan to deal with your patient or patient’s family’s debt is realistic, practical and sustainable.  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.  You can contact our Hospital to Home Welfare Advisers to get advice about debt options and maximising income available for your patients and their families along with information of other organisations who can provide on-going specialist support.

One of my patient’s parents is being dismissed because they have taken time off to bring their child in hospital? Is their employer allowed to do this?

It is always advisable seeking advice is 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 child 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.

One of my patient’s needs adaptions to their home but the council have refused to award a Disabled Facilities Grant (DFG), is there anything my patient can do?

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 here.  They will also be able to look at other sources of financial help to help with any necessary adaptions

My Patient disagrees with a decision a Clinical Commissioning Group (CCG) has make about their continuing care, is there any steps they can take to review this decision?

If a patient or patient’s family are considering disputing a decision, they should seek advice.

Rules that govern reviews of CCG decisions differ between England, Wales, Scotland and Northern Ireland.  The following information relates to England only.

If a patient or the family of a patient wants to challenge a decision about continuing healthcare they can use the CCG’s local dispute resolution procedure first.  Sometimes using this procedure will cause undue delay.  If this is the case, it might be possible to request a review from the National Health Service Commissioning Board’s review panel.

There are some things that the review panel will not be able to examine.  In certain circumstances this may mean that the patient or patient’s family will need to make a complaint, complain to the Parliamentary and Health Service Ombudsman or possibly seek judicial review.

The Hospital to Home Welfare Advisers are available to provide more information and advice if a patient or patient’s family is considering disputing a decision.